Education for Gifted ASD Child

[bed32]

We are just going through the statementing process for M (age 8). The independent reports show that even by ASD standards his strengths and weaknesses are extreme. The SALT tests last week showed that in some areas he is below the 0.1% percentile (i.e. about what would be expected of a child of 5) and in others he is above the 99% (what would be expected of a child of 16) with almost nothing in between.

 

Already in yr 4 he is getting nothing out of school. In his areas of strength (Maths, ICT, Science) they have little to teach him and in his areas of profound weakness (inference, social skills, writing) they do not have the skills and/or resources to help.

 

Looking at what is best for him both in the short term, and after 11 we are totally at a loss to know where to turn.

 

Much though we love him, we have to admit that he has profound problems with social ineraction and understanding but at the same time he has areas of great strength that have to be reinforced. We feel that developing these areas are as important as addressing his social needs. It is in areas such as Maths and Science that he finds comfort, security and happiness.

 

It is now looking increasingly unlikely that he will be able to function in a mainstream school, whatever level of support he gets, yet in a special school, while they can do very well (or so we hear) on the social side, if they can't stretch him intellectually then that could also cause issues.

 

In some ways an ASD unit in a mainstream school sounds attractive, but the only school in our LEA with an ASD unit seems to be the worst of both worlds and has a very poor reputation both as a school and as an ASD unit.

 

Then there is the issue of day, weekly or full time boarding. I am not sure I can face sending him to a full time boarding school for 38 weeks a year; I just can't see how his bond to us as his parents could survive that. OTOH the advice is that he is likely to do much better in a boarding environment - so perhaps weekly?

 

All in all there seem to be a wide range of options - but none feel right at the moment but of all the options the one that the LEA is likely to push for (current primary followed by 2nd rate ASD) seems the worst of all.

 

Can anyone offer advice - or even advise where to go for advice?

[oxgirl]

Hi bed32,

 

We were in a similar position with our lad when he was younger, he's 18 now. He was gifted in science but with very poor social skills. He had been out of school for the last two years of primary but we wanted to give him the chance of getting qualifications so placed him at an ASD unit attached to a mainstream school. He did come away with good GCSEs in all three sciences, but in retrospect, for us, it would have been far, far better to have used that time to concentrate on his social skills rather than academic qualifications. Now he is 18 but has no chance of getting a job and is not ready socially or independence-wise to join a mainstream course so we are stuck really.

 

Whilst he was at the ASD unit he went into various mainstream lessons and came back to the unit to do homework, etc. He received absolutely no social skills training and was totally isolated from his mainstream peers. He didn't have a single friend and because the ASD unit was very small indeed and the other children there were very low functioning, he wasn't able to interract with them either, so he was totally alone. All I can say is what I now know from bitter experience. The MOST important skill to concentrate on when a child is young is social skills and independence. I bitterly regret sending my son to the school, felt desperate a lot of the time he was there, watching how lonely he was, and wanted to pull him out but felt there were no other options open to us. I just wish we had used the time to help him with the skills that he REALLY needs, because now he is still socially isolated and still has little independence but has a handful of good GCSEs, big deal, they're not worth the paper that they are written on because he can't get on a bus or talk to anyone so cannot use them.

 

Don't know if that's helpful to you in the least, but I can only tell you about my experience through the wonderful gift of hindsight!

 

All the best.

 

~ Mel ~

[Canopus]

I had similar problems of being ahead of the curriculum in certain subjects at primary school and being held back due to a refusal to implement accelerated learning whilst at the same time the school failed to effectively provide support for social skills and accommodate my needs.

 

Home education is probably the only option unless you can find a suitable school - that probably doesn't exist.

[Sally44]

You need an independent ASD specific school for children with average cognitive ability.

 

There are schools out there like that. My son attends one of the SENAD group of schools.

 

There is also the Priory Group.

 

Whereabouts are you in the UK?

 

What did your independent professionals recommend? They should have known of independent schools??

 

The best time to seek an independent school is at secondary transfer AR [in year 6].

 

But until then they need a Statement that details all their needs and quantifies and specifies provision to meet each and every need. What did these independent reports state your child needed in school in terms of hours of support and professional therapies. Was it specific such as 6 hours 1:1 speech and language therapy delivered weekly by a suitably qualified speech and language therapist?

 

Does your child have a Statement?

 

The results you describe are quite typical. My son's abilities ranged from less than 1st percentile to above the 92nd. He is now placed in an independent ASD specific school from November of year 6. He refused school in year 5 and was out of school for about 11 months. He became extremely anxious and now has a further diagnosis of an Anxiety Disorder and OCD. And that is down to him being placed in a school environment that made him extremely anxious and stressed for a period of years.

Edited February 21, 2012 by Sally44

[chris54]

Our son is in his first year at a mainstream secondary school, he is academically able and excels at science, ICT and maths.

Despite the school being an academy, they do make good provision for SENs, and are at the moment bidding to have an ASD unit at their larger site. (My son goes to the smaller site, which is local to us).

 

He works to a differentiated curriculum, does not do languages, does other activities to support social development.

They run a lunchtime club that he attends, he has a very close working relation with the senco, who I must say does a very good job of foreseeing problems. (When they went to the pantomime at Christmas she arranged for him to sit in an aisle seat with his form teacher next to him.)

 

For most lessons he is in what they call a nurture group, 10 pupils with TA support. some work is done in smaller groups.

 

The support he now gets goes beyond what is provided for in his statement. (The school with the support of the EP has made yet another attempt to amend his statement to reflect the support he actually gets).

 

Our son was recently moved up to group 2 for maths and science, this mean that they had to put TA support into these lessons which would not normally be there.

 

The school guarantees a 6th form place to all its pupils, tailoring a course to suit their abilities.

 

This is a large, well funded academy, over 2 sites, the avenger class size for the whole school is 20. As has been stated before on this site it does worry me that much of the support my son now gets is down the the school and the staff. If at some time in the future there was a change of staff or the funding arrangement to the school as a whole, this could change.

 

Our LA refuses to accept that there is a need for special provision for academically able ASD children, even to go to the extent of blocking parent attempts to set up a special free school to cater for this group. (unlike other free school, special free school need LA approval before they get funding from the government)

 

The latest modal being adopted by our AL for ASD units attached to mainstream school is that they will be fully integrated into the whole school and not be "stand alone" units, whatever that means.

 

We pondered long and hard about secondary school, in the end we went for our local school, our site is less than a 10 minuet walk away. Its working out OK at the moment but who knows what the future will bring.

Edited February 21, 2012 by chris54

[LancsLad]

Bed32 I really welcome your post because it is balanced and I hope to keep this balance going. Firstly the decision regarding your son is down to you we can try and offer insight from many perspectives but ultimatly you have to decide.

 

I would like to pass some thoughts based on someone with ASD who is 46 years of age and who has had a very mixed life to date, see my profile for more details. I think we have to look at the phases of childhood as part of a far more extended process. I suspect I am a bit over half way by now but in looking back and in planning the next phase of my life I am fully aware that they are all fuuly connected, the seven ages of man as ancient philosophy described them. I think a lot of simalar posts on the forum are dominated by parents who possibly only think about the first one or two at best.

 

I have been described by professionals as having quite severe autistic traits. personally I do not like the idea of grades but I would not arguee that my strengths and weaknesses are very polarized. Also when I have been with other adults on the ASD and we have compared notes on symptomatic issues I tick an awfull lot of factors in my daily life which can be attributable directly back to my AS. I want to make this point for one reason and that is a lot of people might say that someone who does ok in adult life must only have slight AS symptoms and that my child will be much worse, I really dont think that is true as I had lots of issues as a child through non attendance at school, self harm from a very early age, depression etc.... What I can say is that in my life the balance of power has certainly been with my strengths and not my weaknesses and that balance only increases in favour of my strengths as I have more and more control over the directions I take.

 

In my life I have been very fortunate to have been both a teacher and a foster carer and have had the pleasure of many individuals pass through my hands onto very sucesfull careers and into fulfilling adult lives even as parents themselves. As such I do not base my beliefs on me alone but on what I have experienced with others. I want to use one example in which I have changed the individulas name to Dave.

 

My first experience of Dave was at the age of 12 or 13 as a very quiet lad who was in one of my design and technology classes. He positioned himself well away from the hustle and bustle of the workshop but was very meticulous if a bit slow and methodical in how he worked. I then started to realise that Dave would turn up with a few like minded friends and hang around outside the teaching block at the start of dinner time, I would say hello and he would force a smile back at me. When a colleauge had finished his lunch he would let Dave and his mates in to his room where they would make electronic circuits. As Dave moved through the years I would see more and more of him around the area and was pleased for him when he sat his exams in technology a year early and passed with an A grade. The following year he would drift into my workshop and bring in a variety of systems projects and wanted me to help with incorporating them into products as they would appear in a real world scenario. At this age Dave had mixed reviews from his peers, he was no threat to them so they either ignored him or saw him as a bit of a geek and as such kind of respected him. They knew that asking him about one of his projects could be a mistake as sure they were curious about what it did, but knew they would be stuck there for 20 minutes whilst he explained in intricate detail.

 

The school staff also had a similar response to Dave, sure he was excused from PE and came across to work on his stuff, better than the long string of notes he had used previously. I really got to know Dave when he moved into the sixth form and I started as part of a team teaching him A level. His weaknesses about relating to the creative and emotional aspects of design were very marked in contrast to his practical and technical knowledge which I found fascinating. Prior to the Easter in the first year we asked the students to go home and come back with an idea for their major project, we advised Dave to keep it technical and play to his strengths. On returning we sat down with him and asked for his idea. "A satellite", what "a satellite the sort which goes into space, they are quite simple really". In the following 12 months we watched at close quaters as Dave built his satellite, I fondly remeber purchasing for the school the latest industry standard computer and software for many thousands of pounds at the time and spending weekends teaching ourselves what we needed to know often locked into the school with supplies untill we could sort out insurance to enable it to go home with him at weekends.

 

The satellite progressed through to completion. It was tested at a top university and came back with flying colours and the answer to the question would it work. The reply was yes it would in theory, but might not be able to fully resist the shocks and vibrations of the launch, but it had a good chance and if Dave wanted a place on their course he only needed to ask. Dave went on to meet HRH the Price of Wales when he was runner up in the Young Engineer of Britain competition. It was at this time he walked into a nightmare. Dave was accused by a girl in the sixth form of raping her on the way home from a party. I asked Dave to his face had he raped her, he said no once and that was good enough for me as he was the most honest individual I had ever come across for his age. The rape case was eventually dropped a few weeks before it went to Crown Court. The girl it transpired had sex with some other boy she liked, became pregnant, her parents found out she had the child aborted early on then she fabricated the story and Dave was an easy victim. The interesting thing was that though this girl was popular at the time the vast majority of the sixth form who I knew very well as an assistant head of their year supported Dave though he had no witnesses to back his story up that he walked home from the party alone.

 

Dave made the decision to go to a low profile university where he felt he might fit in a bit better. He found the transition tough, I remeber him coming home early doors, and me convincing him to give it two more weeks and if he didn't settle down a bit then fine he had given it his best shot. He hung in there and in his gap year worked for a major distribution opperator where he designed and developed one of the very first logistical tracking systems to go on their fleet of lorries. I spoke to one of their directors who said he was embarassed that they couldn't afford to pay Dave what it really was worth but they gave him a nice cash sum and paid his way through university, as he put it, he could drive a better car than most of the staff at the uni, and his digs were a lot better than most.

 

Dave went on to go back to his first love space for a while first working for the Russian Space Agency, then NASA. He is now a nuclear scientist working on the reactors at the British Anatarctic Survey Base, and the last time I spoke to him he was very happy.

 

This is one story I could share. Hindsight is a very powerfull tool. As Dave progressed through school it started to come out that he was something special, but then again arn't all our kids. When he started winning awards teachers who otherwise wouldnt have been interested talked about the kid who had problems when he first arrived in the school. As assistant HofY in the sixth form I looked through his school file whilst compiling his university application and there was a number of letters from staff in the first two years which wanted him out of their lessons for his attitude at times, as well as records of a few playground fights. It was like reliving my own school experience. The PE teacher who told me he had problems changing in front of the other kids so he made him key monitor and in charge of putting the kit away as he had given up on him taking part. When we talked about school on those weekend lock ins I explained how difficult I had found school up to the point where I could find my own zone and escape into, how I had to work to get into a place where I was there on my terms, he agreed.

 

I think there are points in our lives when we come to junctions and have choices in which way we can go. When I was young there was no choice of special education. The schools I went to were so poor they were quick to close down as soon as school numbers fell in the town as they were more of less failing on todays terms, and that was in a very poor run down northern industrial area. My only choice was to battle on there were no easy options. The result was that the learning environment was brutal. But through exposure come experience, and through experience confidence, and through confidence belief and beacause I believed in myself I took responsibility and ulitmatly action in my life. I was the first person from my school and in my road to go to university, not because I had the social skills to get there, far from it as I managed to blow a number of interviews along the way, no because simply I was intelligent enough to do so and had the qualifications to back that up. I even had problems getting some mebers of my schools staff to support my applications.

 

Two years ago i had the privellage following my AS diagnosis to be part of an AS group at university. I was over twice the age of the next oldest member but it was a real privellage to sit with them. I would talk to the groups NT organiser in my own time and she would ask did I find the group frustrating. My answer was never it was really interesting as I could see myself so clearly at that age and also knew I would have been very poor at listening to advice from someone in my position. In life we learn from our experiences and we get stronger as a result. Nobody said those experiences have to be pleasurable in fact the most valuable ones are often very painfull.

 

I am a father to a 7 year old son who races BMX, when he crashes it is hard not to run out onto the track, but there are medics out there and he has to pick up his bike and carry on. As parents we have to look at the big picture and recognise that whilst BMX has given him a few cuts and bruises and he has been hurt at times it has done wonders for his confidence and self-esteem. If on the first few occasions he crashed had we run out onto the track our own anxiety would have transfared onto him and as a result it would have broken down the confidence he was starting to gain. He has yet to have a crash where he has broken any bones, he has body armour to help a bit with that, if he did then that would be a big test as he has only been racing for a year or so. What we would do is point out to him the other people in the club who have big crashes and who come back. This year he has seen the clubs best rider smashing an arm to pieces and needing a few plates to piece things back together. Now that they are back racing as hard as ever my son has a role model to look up to and can see their love of the sport.

 

Having a child with AS is like witnessing a lot of crashes on a life journey. It is important to recognise that often between these crashes there are examples of real achievment. This is my experience in life and it is what I would expect. The question is do we keep riding along a difficult track which is highly emotional but influential in our learning experience or do we seek a safer environment. One thing I do know and that is growing up as a child is a complex experience for everybody regardless of ASD. Later this year I will be going to watch my favorite spotrs at the paralympics, only chance of tickets, from memory they havn't built specific venues for this event rather they are using the same ones. Likewise from memory a lot of the sports are the same as they are for able bodied individuals. If ASD was a category which way would we go in allocating its difficulties into either existing sports or would we create a new one for it? There are some fascinating sports now developed for the most severly disadvantaged individuals due to either physical or learning difficulties. However for most disabilites standard sports are a perfectly acceptable vehicle. No one is saying that the paralympics is all inclusive, no you have to be ###### good to get there thats the point. ASD is in my opinion not a disability, in my personal experiene a lot of my skills are a distinct advantage over NT's. If it is not a disability but rather a condition to what extent should we be trying to provide alternative safer environments. We wouldnt design alternative sports, rather we would personally accept if we were good or not at them!

 

As you can see I am all for inclusive mainstream education. It might not have been the best environment for me but it was a real world one which was strategically best placed to lead me into the next phase of my life. I am sure a lot of people will come on the post and say how wonderfull alternative school placements have been for their child, I would not argue with that. What I have yet to see is any arguments made for what has happened in the next phases of their childs lives. We are at a period where the weight of diagnosis is with children with a few of us oldies offering up examples of individuals with a diagnosis later on in our lives. Any modern secondary school will be a better environment than what I had to experience, we don't have adults frequently caning you for mistakes atributable to AS, but I kind of feel that my succes in life was not in spite of my hard experiences but because of it! And to be truthful whilst I can understand my behaviour at the time in terms of AS if I hit or was abusie to another NT it still hurt them and I had to be shown that my behaviour was unaceptable even if that meant being hit back by an adult at the time. And this is where I think your answer might lie. I believe you need to take ASD out of the equation altogether as it is something totally different from our core personalities which should be what drives our behaviour. When you look at your son what do you see in the person in front of you, what is his core personality. A lot of parents on reading their posts give the impression that they can't look past the ASD traits and see the real person inside. I know that I am quite a sensitive soul with a very strong moral fibre running through me as a result I am very up for fighting a cause. If i get knocked down I tend to pick myself up and throw mysef back into the task in hand, I have a fair bit of resolve and will see something through to a conclusion. The lad Dave I used in the post was a great strategic thinker, but his greatest trait though was his loyalty and love for his elderly grandmother who had brought him up on her own, his driving force was to make her proud of him, his intelligence was simply the route to achieving that goal in his eyes. We all need a driving force to get us through life and that needs to be developed but it emerges from our personality base. If you look at your son and can see that potential in him and a belief in yourself that he can get through this then my belief would be to keep him in a good strategic long term position. If on the other hand your son has the type of personality which is hyper sensitive and emotionaly fragile then you may need to take another option. What I would say is that as we grow up year on year our personalites develop and my real concern is in taking a decision on behalf of an individual which will one way or the other affect their life chances before that personality has a chance to develop and express itself.

 

Just a few thoughts in providing a mature AS perspective, am still looking for an 80 year old with ASD to advise me through the next thirty years or so in my lifes journey.

[Sally44]

As has been said already, each child is unique.

 

But to remain in a mainstream environment the child has to be able to cope with both the academic, speech and language, social communication, emotional literacy side of things.

 

My own son has a number of diagnosis that meant he was failing [and recognising that he was failing] in every area.

 

He has a severe/profound speech and language disorder and can be hard to be understood, and often does not understand what is being said or required of him. However he can memorise things immediately and can repeat hours of TV or DVD dialogue for hours and can sound very intellectual.

 

He has severe dyslexia and dyscalculia, which meant he struggles in lessons, and also dysgraphia where he struggles to write. He is currently 11 and still unable to read and write independently. Yet, as Lancslad has already mentioned about another child, my son is already designing computer hardware. One of his ideas were so good I tried to get it patented. But found that a Japanese corporation had already patented that type of design last year.

 

He also has dyspraxia, and so is not good at sports or motor planning. He cannot brush his teeth, tie his shoe laces or ride a bike.

 

He has sensory processing disorder and can easily become overloaded and/or overwhelmed in everyday environments we find okay. He could not cope in his former classroom and often took himself into the corridor to work alone.

 

He was bullied a few times, but generally he was well liked. However he developed a social phobia because he could not understand or interpret voice tone, facial expressions or gestures. He told me he could not tell if someone was his friend or enemy - so he avoided everyone. He also has face blindness and does not recognise people.

 

This daily stress and anxiety led to tics, and extreme anxiety such as vomitting on arrival at school - which would lead to him being sent straight back home for 48 hours [a school policy to prevent the spread of illness - but the school would not listen when I kept saying he was not ill].

 

You know your child best. And you will see over time how he developes. Is he coping/flourishing or is he becoming more anxious, refusing school and refusing to do things he used to do or enjoy.

 

Whatever you do decide to do remember that it takes a long time for things to happen or be put in place. A Statement takes 26 weeks from start to finish IF the LA agree to assess for one and IF they agree to issue one. If they refuse to assess you have to appeal [a further 6 months wait], and if they assess and refuse to issue a Statement you have to appeal [again another 6 months wait].

 

What really angers me is children that the school and professionals have KNOWN about for years, and who they KNOW won't cope [and believe me these professionals do have a good idea of who will and who will not cope] and still nothing is done to try to support them where they are, or move them to a placement where they will cope. Those children often end up refusing school, typically just before examinations, and then end up leaving school with nothing and with a phobia of the education system in general.

 

And although my son is assessed as having average cognitive ability generally, he has difficulties in formulating sentences [either to speak or to write]. And this directly relates to being able to absorb information, manipulate it, and deliver an essay or topic required by school. My son struggles to know the key issues, or keep on topic, or produce the language to explain or describe what he wants. And on top of that he has Dyslexia. At my son's former school he was assessed as being KS 1b for literacy. Yet at his new school, with the support or a reader/writer, his work is straight away at a level 3c.

 

But just from an environmental point of view my son would not cope mainstream. After 3 years at his former school he still did not know most of the names of the children or staff. Most of the time he had retreated into his own world and was oblivious to what was happening around him. At his new school he already knows all 8 classmates, and his teacher, Dyslexia teacher, SALT, OT and TA's names.

Edited February 21, 2012 by Sally44

[bed32]

Thanks to all who have responded.

 

To fill in a few details, we are now in the assessment stage of the statutory assessment. So we are now thinking seriously about what we want the statement to say, and whether we want to have a different school named; hence the questions we are now raising. We are based in Croydon but we would certainly consider moving if necessary to be close enough to the right school.

 

The SALT who did the most recent assessment recommends one of the Cambian schools, and other professionals have suggested that at least weekly boarding works well for children with his difficulties, and in fact I think that would be our preference. As far as I am aware the Cambian schools don't do weekly boarding and we are really wary of the idea of 38 week boarding. I would be very interested to hear anyone's experience of the sort of boarding and what it does to the parent/child relationship.

oxgirl - your experience reinforces my determination (?prejudice) against an ASD unit - I think that would put, and therefore the whole family, through 5 years of hell and still not equip him with the skills he needs. We are sure that achieving a basic level of social skills must be the number one priority of his education, and the ASD units we know about won't do that.

 

LancsLad - thanks for the personal insight. Up until recently we had expected that he would go to a mainstream school, and this autumn we started going to some of the open days. We are lucky that we are within easy reach of at least 3 good independent schools which are both academically able and have good provision for SEN and ASD pupils. However realistically he needs to make a lot of progress between now and then before he could cope and at the moment there is little sign of that happening. That's another part of the equation - do we hang on in there at a school that is doing him little good (through no fault of their own) in the hope that with the additional resources the Statement will bring he will start to make progress again, or do we move him as soon as possible to a specialist school.

[chris54]

I would add that the hardest part of school life for my son is the social interaction. He does not have any friend and only knows a few children's names. It has taken him untill now to remember his teachers names. He talks to other children OK in the class room, even helping some with their work (ICT), but this does not transfer away from the class room, other than if the other child initiates a conversation. When in conversation with an adult he can talk the hind legs of a donkey, if it on a subject that interests him, as the senco has found out.

 

He takes what is said very literal. An example of this was when asked as part of the pupil contribution to the recent interim review. "What do you like about going to school?" answer he gave which is documented was "Walking along the path"

 

As is common, he spend most of his free time at school on his own. This is well documented in the EP reports. The lunch time club has helped with this.

 

He had delayed reading, but now seldom is found without a book in his hand, (Other than when he is doing something on his computer). His hand writing continues to be a big problem, it is almost unreadable, his history teacher has to get one of the TA to translate for her. He tends to spell very phonetically, which does not help.

He has now been told he can do his home work on the computer and print it off or email it in.

Home work is a problem, Its school work, why do we have to do it at home. It is always done to a standers way below what he is capable of. We are at the moment sorting out after school homework club. It will have to be on a set day with a set time to finish as one of us has to meet him from school. The senco is liaising this, it is run by someone he already works with so hopefully this will solve some of the homework problem.

 

I can not imagine my son going to residential school, but I suppose if we felt it was for the best I would consider it.

 

I think no mater how well suited a school is, there will always be things that need to be addressed. It realy on ongoing thing, what realy help (us) is having the staff on your side.

[Canopus]

Already in yr 4 he is getting nothing out of school. In his areas of strength (Maths, ICT, Science) they have little to teach him and in his areas of profound weakness (inference, social skills, writing) they do not have the skills and/or resources to help.

 

This is basically the keystone problem. If a kid is below average, average, or slightly above average in all or some subjects then school often works out fine. If a kid is very advanced in certain subjects - like up to GCSE level in Y5 - then there are very few schools which can accommodate their needs and either special tuition or home education are the only options remaining.

 

Our LA refuses to accept that there is a need for special provision for academically able ASD children, even to go to the extent of blocking parent attempts to set up a special free school to cater for this group. (unlike other free school, special free school need LA approval before they get funding from the government)

 

I find this very worrying as it looks like the LA officials are still stuck in that mindset from the 80s that kids with high academic ability cannot have SEN. The cynic in me thinks that this is a political move.

[LancsLad]

I think which ever way you go on this one their will be the inevitable questions around what if?

 

My question in many of these posts is what is the defenition of coping, and therefore conversly how do you define not coping?

 

As a foster carer me and my partner have for example had to reintegrate an 8 year old into school who had 3 days experience of being in school in her life! Many would argue that for a lot of this process she was not coping well in comparison to the peers around her, but what would you expect. It was a case of dealing with things day by day and offering massive amounts of support at home in talking through strategies and building her self esteem only for it to be smashed to pieces the following day. But we carried on day by day and made progress. Was it testing for all concerned the child, us and the school of course it was. Would the school have rather she went somewhere else sure. Did the child kick off on a daily basis, yes. But at the back of the process was our own resolve to make this work which was emotionally draining as she was one of three other kids in our care at the time with equally as important issues and we had to hold down two high pressured jobs as well. Did we complain not really we didn't have much energy left for such things to be honest.

 

If something was going to let the child down it was going to be us but we understood our responsibilities as carers and what we had gotten ourselves into. At times I had to ask myself am I coping with the child and the school and it is hard.

 

As a foster carer of a number of very difficult children a lot of the behaviour and responses parents describe on these forums as children not coping I would transfare into other scenarios as children doing pretty well given their backgrounds and their individual needs. What I will say is that when you are dealing in such situations my experiences have been not to have massive expectations about these children before you meet them and treat every positive as a bonus. I know if I had an image of my perfect child in my head non of these kids we worked with would have stood a chance. I simply highlight that our definitions of coping and not coping are obviously linked to our own expectations. I am not against setting the bar of expectation as an adult this is important, but we have to set it at an appropriate height and offer support and encouragement to clear it on a regular basis and be prepred to gently raise it consistently if real progress is to be made.

 

When people say their children are not coping yet still attending and passing subject areas what are they saying in reality? My kid occasionally knocks the bar off, my kid can't jump as high as my friends kids or ASD kids can't do high jump everyone knows that. Coping can be a very emotive word. When I was working at getting someone into education for the very first time with no basic skills due to having been brought up in a heroin drugs den the level of the bar was in effect on the floor but we eventually got there through a lot of ups and downs even to the point that when she was reunited with her mother who had escaped from a horrible life of prostitution and drugs the child was able to start to tech her mum to read and write which was a wonderful thing. To a lot of people two individuals aged 8 and 25 sharing a book aimed at a 6 year old might not seem like much, but to me it was a fantastic achievement and one I felt privelaged to have been part of.

 

I think we need to reflect on our expectations and what we see as success and failure and what might simply be part of the process of growing as individuals, whilst this certainly applies to the child it is also true of us adults in whatever guise be it parent or education professional.

[chris54]

All we ever get from the LA is that there is adequate SEN provision.

They are across the board reducing the number of places in special schools in favor of mainstream units, which will be fully integrated? withing the mainstream schools.

 

I do think that what for one parent/child is "not coping", for anther may be "all's fine". It does depend on were you set the bar.

 

If on the grounds of school attendance/refusal, then my son has always coped, he has never missed a school day other then real illness. If you measure coping with school by how much he get out of going to school, how happy he is when there, then there have been times when I could say he was not copping at all.

 

As a child, I never missed school, but by the age of 11 could not read or write. Was I copping. School was just something you had to do, to get through, if you learnt something along the way that was a bonus. At least that was the way it was seen by many back then. I just missed the school leaving age of 15 and had to stay on untill I was 16, but left as soon after that as I was allowed. Started in a job the next day. Didn't like the job much but at least I got paid. Went on to do an apprenticeship and worked for the next 25 years on building sites. By the measure of most I had done well.

Do I wish I had got more out of school, I do now. I feel there is so much in me that is untapped.

 

What I hope to do for my son is to give him the opportunities to fulfill his fall potential. What ever that may turn out to be.

 

Has this gone a bit

Edited February 21, 2012 by chris54

[LancsLad]

Sure it has gone a bit off topic but as much my fault as anyone elses.

 

Chris for me you make an excellent point here when you relate to your own life, and that is life is not perfect, and how many of us really do reach our true potential? If we are to reach our potential then ultimatly the lesson we have to learn is that it is up to us to find the strength from within to do so. When we are a child we are not in a position to accept this responsibility and in my opinion it then falls on parents to nuture their children as best as they can to this position.

 

I think in society we have come to the conclusion that it is the schools responsibility to nuture the child and get the very best out of them. I have my ideas where these ideas come from but this was not the case when I was growing up. Schools were there to provide opportunities to learn and they did their best given resources and in the mix as in any walk of life there were some very good teachers and some very poor ones and a lot in between. The truth is we have not really put in that many extra resources over the years, what percentage of GDP is spent on education compared to thirty years ago? We draw from the same pool of teaching talent, if anything it might have got weaker, yet our expectations have gone through the roof.

 

I suspect like me growing up I was kind of aware of grammar schools, there were none in my town and the idea of private eduction was to be honest way beyond my comprehension. I simply got on with it, and in reality that meant getting on with it whilst having AS.

 

As I started teaching I became aware of the differences across schools and to be honest when we were foster carers some of the kids which came to us were not in the best schools in many ways, but it was their school and as such was a stable element in their life. If I asked them were they happy then the answer is a lot of the time they would not be far too much going on in their lives to be honest. I have taught in a nice middle class area as well as some very deprived areas and to be perfectly honest the kids from the poorer backgrounds are always happier in general terms, why because i think the expectations are way too high on kids in general.

 

Education has become a market place with the empowerment of parental choice. Very large comprehensives know they can't offer small comfortable cozy environments and because of this smaller and independent schools play against this and I believe this has raised expectations amongst parents. Personally I do think specialist schools are appropriate for some children, but the natural conclusion would be we all should go to a special school perfectly tailored to our needs who pays for this god knows. Theres a big part of me says you can't have it both ways. You can't take lots of kids with AS out of mainstream systems and then expect society to embrace them back and make adjustments for them. For the majority the path has to be a tricky line somewhere down the middle, the world is not perfect but that is the case for everybody and as a result we have to learn the lesson that life is often a compromise. I think this is a lesson which is being lost on society we dont want to seek compromise what we strive for is empowerment, and the problem with empowerment whilst there may be a few winners there always seems to be a lot more loosers. My belief is that the loosers are often the kids in that we spend so much energy fighting over where the kids might be in an ideal world that we loose sight of where they are and fail to understand that in many cases if that energy was spent nurturing the child they might make more progress in life.

[Sally44]

When we went to Tribunal I had stated my case and finished by saying that IF my son received the level of therapy and input he NEEDED, there was a good chance of him being independent both living and working. But IF he remained where he was there was every indication that he would leave school illiterate, with no social skills and no qualifications. That would mean he would need 24/7 adult support, benefits, housing etc for life. That surely costs more than a placement that actually teaches him both academic, social and life skills.

 

If your child is not keeping up with the other kids academically, socially, emotionally, behaviourally or is not coping from a sensory point of view, then move him. The gap gets wider, even with support and therapies in an independent placement he will make better progress than mainstream, but he may never "catch up".

 

One pupil from my son's current independent placement has severe dyslexia. He left that school and went onto the Royal School of Art. He is an accomplished artist now, but he still has the reading age of a 6 year old. What the independent school did was find what he was good at and equip him so that he could follow that path successfully and independently.

Edited February 21, 2012 by Sally44

[chris54]

If your child is not keeping up with the other kids academically, socially, emotionally, behaviourally or is not coping from a sensory point of view, then move him.

 

That sounds like sound advise. The problem is where to move them to. Which I think brings us back to the OP.

[bed32]

If the gap only widens then mainstream seems pretty unrealistic.

 

Is there any reason to hope that the sort of help we can get on a statement in his current environment will help improve his social skills, and re-engage his interest?

[oxgirl]

Is there any reason to hope that the sort of help we can get on a statement in his current environment will help improve his social skills, and re-engage his interest?

 

They'd have to set up some specific measures for him. They could set up a buddy system, so a group of kids include him at lunchtimes or breaktimes. They could organise social skills training groups once a week, there must be other kids at the school with similar social issues. They could talk to the kids in his class and ask for their support in helping your lad to socialize. There are things that they could do, but they have to be willing to set things up and follow them through. It's no good just leaving him to get on with it, he needs specific help with his social skills.

 

~ Mel ~

[Canopus]

One pupil from my son's current independent placement has severe dyslexia. He left that school and went onto the Royal School of Art. He is an accomplished artist now, but he still has the reading age of a 6 year old. What the independent school did was find what he was good at and equip him so that he could follow that path successfully and independently.

 

It is very important that parents take their kid's talents and strengths seriously, even if they are not in school subjects, if there is strong potential that they can be used in employment. This a more of a general issue than an AS issue but my findings are that a significant proportion of parents of kids with AS put talents and strengths in second place whilst worrying too much about the NC and GCSEs. The mainstream education system and LA officials are rarely interested in anything outside of the NC apart from possibly music and sports.

 

Is there any reason to hope that the sort of help we can get on a statement in his current environment will help improve his social skills, and re-engage his interest?

 

A clear definition of social skills is required here. Do you mean social skills for kids of his own age in the school playground, or do you mean social skills and life skills for use as an adult? They are two completely different things in reality. It is also a fallacy to believe that if you 'get it right' for the primary school playground then you have fixed the social skills problem and everything will run its natural course as the individual progresses through life, so when the leave school they automatically have the social skills for life as an adult.

[Sally44]

In his current placement you would need a suitable professional to put together and deliver the programme. This is the remit of the speech therapist.

 

If you want to work on relationships/friendships, who else is going to be in that group apart from your son? It isn't impossible - but more difficult, because those mainstream kids don't need that input. So they are being withdrawn from either a lesson or breaktime to do something they may not want or need to do. And if there are other kids they may not have a Statement, and so they are not obliged to even provide this for those kids.

 

It also depends on how self aware your child is and what their confidence and self esteem is like.

 

Some children with autism may do well mainstream IF the mainstream kids accept them and IF the child does not feel negatively about themselves when compared with their peers.

 

Social skills are on-going and it needs alot of work and a professional that knows what they are doing. My son has 1:1 therapy and also group therapy, as well as alot of support during classes and breaktimes so that skills he is being taught are prompted and explained over and over and over again in different settings and with different children and adults.

 

For example my son has a 'friend' in his class that is also obsessed about Yugioh. Yesterday this boy was ill and not in school. My son was very upset about this because he wanted to play yugioh with him. But this led onto conversations in school and at home getting my son to think about this boy eg. I wonder why xxx is not in school? Maybe he is ill? Maybe he missed playing Yugioh with you too. When he comes back to school what might you say to him? "I hope you feel better now xxxx." etc

 

He also has to learn that not everyone is interested in Yugioh.

 

They have a lesson first thing Monday morning where they talk about what they have done at the weekend and the other kids have to ask them questions to find out more information.

 

You may get some support written into the Statement at his current school but you would probably need an independent SALT to write the report.

 

But what you have to understand is that the LA are always looking to make cuts. So at the next Annual Review of the Statement the SALT may try to reduce her input.

 

At a school where this therapy is provided "as standard" there is no pressure to try to reduce the input or therapy.

 

I think the best thing to do is to ask for a statutory assessment for a Statement and let the LA/School get on with it. When they give you the Proposed Statement you will see yourself whether it will meet his needs or not. Usually the wording is so woolly and vague and ambiguous that you have to appeal to get the wording legally binding and the provison quantified and specified [which is a legal requirement that LAs just ignore until a Tribunal Orders them to do it].

 

The Statementing process takes 26 weeks from start to finish [6 months]. When it is finalised you can lodge an appeal with SEND. The Appeal date will usually be set for 4-6 months away. You can lodge an appeal about parts 2 and 3 of the Statement, and then add part 4 [the school] later on. That is what I did.

 

Realistically you are looking at a Tribunal date a year away, if you go to a Tribunal. By then your child might not even be in school. In which case his current placement would be ruled out anyway.

 

I also agree with what NC is saying about skills and talents. However it is also important that the child is in a school placement where they are confident and have good self esteem so that they feel confident to use those talents, and hopefully have learnt some social, relationship, friendship and life skills. You could be as clever as Stephen Hawkins, but if you are so anxious that you won't leave the house, that talent is not being used is it.

 

At my son's current school there is an ex-pupil who was very gifted in art. He went to the Royal College/Academy [can't remember what it is called exactly]. He exhibits his work and is doing very well. However he also had dyslexia, and although he has learnt to read and write, he has a reading age of a 6 year old. But what he said was that that school actually managed to teach him to read and right, but more importantly they recognised his talents and they gave him the confidence and skills to use that potential and to go on to achieve all he has. Before he went to that school he wasn't even attending school because he just could not cope in tht environment. That is the difference.

Edited February 22, 2012 by Sally44

[Sally44]

I also wanted to add that Anxiety is a huge part of being on the spectrum. That anxiety is already there and they are in a high anxious state most of the time. But if the child's needs are not being met and they are struggling in school for whatever reason, that continued high level of anxiety can lead to a general anxiety disorder, depression, OCD, tics, getting overloaded and overwhelmed, getting upset and angry etc. And the longer that high level of anxiety/stress continues the higher the likelihood that the child will become ill or will refuse school or will get excluded for something they have said or done.

[LancsLad]

With the absolute greatest respect we are talking about young people here and not some ASD machine. As someone who has lived with AS for 46 years and if given the choice would choose to retain my condition because of the positives it brings I think it is really important that we manage to look past the autistic condition and see the personality of the individual beyond.

 

I personally get concerned that a culture is developing around ASD which is more akin to owning a modern motor vehicle than to bringing up a child into this world. It is a culture of taking the child to the latest diagnostics centre and plugging it in to give a number of readouts. That it is then some sort of process where as owners of the child we have to interprate the diagnositics and find the appropriate servicing centre which will promise to get the child up and running smoothly. I think there is even a belief system creeping in here that some vehicle badges are of a better class than others.

 

If due to my condition I am some sort of machine akin to a motor vehicle maybee I am from a past age. It is possible that I am a beautiful 1960's open top sports car something of an E-Type Jag. Sure it takes a bit of tinkering on a daily basis to keep me going and this is a labour of love. But when the weather is great there is nothing better than for this machine to go out for a good run, in fact there is no better place to be sat.

 

Maybee they simply don't make kids like they used to, possibly there is a flaw in the design process, I doubt it. In a society based on consumption and consumerism I think we are transfaring some of those values on how look at and bring up our children. Having ASD means we are a bit different, possibly even a bit quirky, but this does not mean we are any better or anyworse for the condition, we are simply the individuals who we are. You might look at a classic sports car and criticise it because it does not have air conditioning, sat nav, ABS, air bags etc.... that does not mean it has no value, far from it. Its value lies in being different to offering an alternative driving experience, but I guess the big difference is that you don't really own a classic car you have to build a relationship with it over time.

[bed32]

I am really using "Social Skills" I am really thinking about two distinct areas.

 

He needs to learn how to develop the basic skills required for living. How to organise himself, how to get dressed in the morning without getting diverted half way through to read a book about Ants. How to manage anxiety and stress and not lash out. As Sally44 says, anxiety is a huge part of his life - and risks taking over all together. I wonder if something like CBT would work for ASD kids?

 

Then there are the social skills he needs to get on with other people - either to make friends or at least coexist happily in a shared environment, be that home, school or office.

 

I am particularly worried that a mainstream school, even one with an ASD unit, may not have the experience and programmes in place to help him manage the basics. He has been having SALT for years (albeit irregularly) and that does not seem to be making any progress as they seem to be addressing the symptoms not the underlying cause.

 

At present neither Ed Psych nor SALT seem to be looking at the underlying issues (e.g. anxiety) - I wonder if we need OT or a Clinical Psychiatrist to address that

[Sally44]

Unfortunately that is how the SEN process works.

 

It would be wonderful to live in a world where needs are met without having to get a diagnosis, or a professional to state they have that need, and for support to be provided without having to get a professional to quantify and specify, in minute detail, exactly what the child needs.

 

But IF that is not done and IF the child does not have that detail in the Statement, then the school and LA ARE UNDER NO LEGAL OBLIGATION TO PROVIDE IT. And that is why they don't provide it.

 

This isn't just me banging on about something. Have a look at the ipsea.org.uk website, or ace-ed.org.uk website etc to see that these are continuing on-going problems for thousands of families.

 

If my son's needs could have been met in a mainstream secondary school, he could have gone to the same one his sister goes to, which is just across the road from our house, and which just happens to be the best within our LA.

 

Unfortunately he was at a school that kept denying he had any problems or needs even though he could not read or write at age 10, could not do basic self help skills, and even though he attempted suicide.

 

Now there is a vast range of difficulties on the autistic spectrum and obviously each child is different. And you have your experiences and I have mine.

 

I also know of 3 other families within our village, and all three children are now out of school due to not coping and not receiving the support they needed. Two have serious self harm behaviours. These are all teenagers that will now struggle to find any kind of employement as they have no qualifications, and they also have no social skills because the school/LA did not do anything about that. And these are children that have gradually over the years deteriorated and deteriorated and the parents have tried and tried to get their children help. All these children do not have Statements and so they have received absolutely nothing. And that is contrary to the Education Act and contrary to the SEN Code of Practice, and contrary to Case Law.

 

No parent wishes to get a list of diagnoses for their child. But the SEN process is rather like a mathematical equation. You have to prove you have "a" to get the support "b". Without the diagnosis you don't get anything.

[chris54]

Maybe that it an advantage of going to a large school.

My sons school has about 2000 children in total, 350 at the smaller site he goes to. There is a concentration of SEN children at the smaller site. They do not have a problem putting together relationship groups of like minded children.

The lunchtime group he goes to is purely voluntary, there are always about 10 children there, these are all kids how just don't get the "free time" thing.

His first lesson on a Monday, under the banner of literacy, is a small group, doing a variety of things, some of the work is on individual skills, and some to work on social skills. This Monday the had pancakes.

 

Listening to what other say, I think we must be very fortunate to have found a school, our local mainstream academy school that does provide what the child needs.

 

In my sons statement is says he should get 10 hours of 1-2-1, He doesn't get 10 hours of 1-2-1. He get TA support in all his lessons, most of his lessons are in classes of 10, he gets small group working, he gets access to a lunchtime club. He gets individual handwriting lessons. I could go on. If you add up the total of what he gets it come to much more than is stated in his statement.

 

This is all provided in a large academy school, in an area where the LA is hostile to the idea of SEN school, where they are doing all they can to reduce the number of statements issued, where they are making increasing use of delegated funding for SEN.

 

Point I'm making is don't tar all mainstream school with the same brush. I must say that a year ago I had my doubts about this school despite what I had been told by other. That they had good SEN provision. I had sons name down for the free school we were hoping to be set up. That will not happen now in his school life.

 

But as I have said before it does worry me to some extent that what is currently provided is very much down to the school and staff. If the funding stream for our school was reduced then things could change for the worse.

 

Just as a by word, attempts are in progress to get my sons statement amended to reflect what is being provided in school.

Edited February 22, 2012 by chris54

[bed32]

Chris54 - thank's for the useful balance. It is good to know that it works in some places.

 

In my LA the only ASD unit attached to a mainstream school is regarded by all parents as being pretty useless - and the school itself it poor too. The neighbouring LEA is just opening a re-vamped school that includes an ASD unit that may may be better - and that happens to be closer than the one in our own LEA so that is an option. The problem being that it is literally brand new (opened a week or so ago) so it has no track record by which to judge.

[LancsLad]

I do not agree with the fact that the only way to get help in schools is to get a list of diagnosis for your child. I think that really starts to question the professionality of teachers in general.

 

My partner is a highly experienced SENCO of over 25 years experience. Due to her experience and abilities she sits on assesment pannels, is a mentor to university postgraduate programmes for special needs and her school acts as a placement venue for student training. She currently manages 15 support assistants in what is a large mainstream primary. She would argue strongly that support for children across a wide range of areas in her experience has always been there. If she has a frustration it is that more and more of her time is being taken up with dealing with the statementing process due to parental demand, and less time with the child.

 

To give one example from this month a child in her school has been given a statement as a result of the parents insisting that the process was followed, possibly using up at least a day of her time. I know that since September my partner has been of the professional opinion that the needs of the child were being met by the school. Now that the statement has come through it is telling the school to 'cut' the contact hours the child is currently recieving, what is she to do? Her concern is that the statementing process is becoming a battlefield with parents exercising their rights to demand diagnosis in strengthening their cases. She has real concerns based on years of experience and training that a lot of GP's are falsly diagnosing children due to parental pressure and rather than being able to take a broad view of all the childrens needs in the school she is being forced down pathways which are against her best judgements. This is against a background where resources are being stretched as more and more statements come through. In the vast majority of cases the assesment pannels are of the opinion that the childs needs are already being met by existing provisions.

 

My real concern is that the teaching profession can ill afford to loose individuals such as my partner who has had hundreds of children if not thousands pass through her hands. She is getting more and more disheartened and every week she is having to deal with parents who she feels are totally disrespectful of her experience and any advice she gives regarding their child. There are simply not the places in special schools to take up even a small percentage of statemented kids in mainstream and as a result I am really concerned that unrealistic parental expectations are in danger of breaking the system which at the end of the day is in no ones interests.

 

I think one issue which needs to be addressed is to what extent are children aware of their parents actions when they engage in the process of looking at alternative provision. In my experience of dealing with children as a teacher and a foster carer, if a child gets the slightest inclination that the parents are not supporting their existing school then they have every reason to either refuse to attend or to kick off once there rather than take responsibility for their own behaviour. If getting into an alternative school was a foregone conclusion and a quick process then this might not be too big an issue, unfortunatly that is not the case.

 

Just a few personal ideas based on my own experiences.

[bed32]

Statements are important because that is what enables access to resources. Our LA's delegated SEN resources to my son's school is <£1000 pa per SAP child. However everyone agrees that the support he is getting (currently 18hours a week) is simply not enough and his needs are not being met.

 

The pitiful amount LA gives school goes no where near meeting the provision they are providing - let alone what he needs. Budgets are tight these days so the help my son is getting is at the expense of other children in the school - and that is not fair on anyone.

 

Statements are there precisely for these cases and saying that that is not the right way to proceed in the case of an Autistic (NOT Aspergers) child seems perverse.

Edited February 22, 2012 by bed32

[Sally44]

What your partner should do is detail the total number of hours the child needs support for in school in her report towards the Statement. The Statement is basically a cut and paste job of reports. The SEN Code of Practice clearly states that EVERY need must be identified and that provision MUST BE QUANTIFIED AND SPECIFIED IN TERMS OF HOURS OF SUPPORT AND STAFFING ARRANGEMENTS. That is what the SENCO, and all other professional involved should do, by law. If she does not do that she is bowing to pressure from the Head or the LA and is not fulfilling the legal requirements required of a Statement.

 

Whatever criteria, or budget a LA has it is irrelevent because the LA is legally obliged to fund the Statement for everything on top of delegated funding and anything additional on top of that which is typically provided by the SALT, OT or EP. That is the judgement the SEND Tribunal will make over and over again because that is what the LAW says.

 

However that law only applies when you get to Tribunal. Up until the Tribunal hearing and the Tribunal Decision, the LA/or school/or professionals are not obliged to do anything or provide anything legally. And unfortunately the SEND Tribunal cannot penalise, fine or punish LA's that produce illegal Statements and who actively train and encourage their staff to produce woolly, vague and ambiguous reports and Statements.

 

Indeed Case Law says that the Statement should be so specific that no-one is in any doubt as to what is to be provided. And Flexibility should be for the benefit of the child and not the benefit of the system.

 

I don't doubt your partners sincerity. But I think that if she does quantify and specify the amount of support that child needs, the LA/school may not be too happy with her. She could always attend the Tribunal and tell the Panel herself the amount of hours the child is currently receiving, and she can say whether she feels that is meeting their needs. She could inform the parents that they can request that she attends the Tribunal as their expert witness. Indeed the parents can Supena anyone to attend and the SEND Tribunal will issue them with a summons to appear which they are legally obliged to do.

 

At my Tribunal I supened the SALT, OT and EP and on the day they ALL agreed with the findings of my independent professionals. There was no disagreement between them. Only the school and LA saying he did not need it. But ALL the professionals [LA, NHS and Independent] agreed he needed that level of input and that placement. That is why we won.

 

I think you need to visit all the school options because IF they are unsuitable, you need to know WHY.

 

They must be a similar peer group. They must have similar academic ability and social skills. You also need to know via your reports what class size your child needs. Class sizes of around 8 are considered the size of special and independent placements and autism units. However in my experience all the ASD Units had a policy of "feeding over" children to mainstream classes. Again it depends on the child. But my own son could not tolerate that size of class or learning environment. He would simply vomit, get headaches, get extremely anxious. He would retreat into his own world etc.

 

When I did a Freedom of Information Act search, I found that the SALT had sent a letter to the class teacher stating that my son could not concentrate in the whole class environment and that he repeatedly took himself out into the corridor to do his work. She commented that that work was the best he did, and asked the teacher "do you think this is relevent?" Of course it is relevent. He is showing them what he needs to learn and demonstrate learning, but they are just not listening. The school could and should have said that in their report. I wonder why they omitted that? They also omitted that he knew half the words in year 5, that he knew in reception year. I wonder why they omitted that? They also failed to mention that he was not making progress, and even on the day of the Tribunal the SENCO said "XXX is making progress, and progress does not have to be just academic." Which is true. But the Tribunal Panel asked for clarification and said "it has already been established that this child has not made academic progress, and actually knows less in year 5 than he did in reception year. As he is now out of school, is refusing to socialise with other children, and has recently been further diagnosed with an anxiety disroder and OCD, can you please explain in what areas and in what ways you feel he has made progress?" Of course the SENCO could not say anything because he had not made progress. He had deteriorated to such an extent that he was a recluse within his own home.

 

I also came across a letter the Autism Advisory Teacher had written to the head of the specialist teaching services at the time my son was going through the Statementing process. She was very unhappy that the LA Inclusion Officer was trying to keep him mainstream and stated that "xxxx needs to be taught in a dedicated environment, in class sizes of no more than 8 suitable peers." The LA ignored this advice, and didn't produce it to me or the first Tribunal we went to. They hid evidence from us! The Statement they produced said "opportunities for small group teaching", which actually means nothing because all kids in a mainstream class are given opportunities for small group teaching.

 

Regarding Statements, there is no monetary limit on them. The needs have to be met by the LA. That is how the law currently stands. I don't think that parents do seek a diagnosis for something their child does not have. ASD is a medical condition, and if it is diagnosed that is usually over 18 months and involves the teacher, SENCO, Clinical Psychologist, Speech Therapist, Occupational Therapist, Developmental Paediatrician. Are you suggesting that all these professionals are being manipulated by a parent to produce a diagnosis the child does not need?

 

My own son has Dyslexia. In 2009 his Statement said he was "likely to be dyslexia". At the Annual Review I asked the EP if she thought he was dyslexic. She said no. The SENCO asked "what would be the benefit of xxx receiving a diagnosis". The EP replied that if xxx received a diagnosis his mother would want that including in his Statement and would want that need providing for in section 3." But isn't that what a Statement is supposed to be about. I have much more evidence of professionals trying NOT to identify need simply to AVOID having to provide provision, support or therapy.

 

Having said that her opinion was that my son did not have dyslexia, I asked her if she had seen or assessed my son. She admitted that she hadn't, eventhough the Statement said he needed to be assessed to determine if he had dyslexia.

 

A month after that the LA decided to do a total re-assessment of his Statement, and would you believe the EP went into his school, assessed him and did diagnose him with dyslexia, just one month after the AR where she said he did not have dyslexia!

 

Now that Dyslexia has been diagnosed - and remember I had to get the diagnosis because the EP said without it there would be no provision for dyslexia. He receives 3 hours 1:1 teaching a week. And the benefit of that is that I am hoping he will leave school literate. Because surely an illiterate autistic adult with no qualifications and no social skills is going to cost the taxpayer a lot more money needing 24/7 care, benefits, housing, etc for all his life?

 

I am trying to get my son as independent as possible for his own benefit and for the benefit of society as a whole.

[LancsLad]

Sally my partner sits on the pannel and has done for a number of years so I am pretty convinced that she knows what she is doing that is why I suspect that two of the regions universities turn to her for input into their own teacher training programmes in respect to SENCO's and their roles in the education system. It is also why she acts as a mentor to other SENCO's.

 

In saying what my partner should be doing in your post I think you only highlight my points in general and that is for many parents out there no matter how good a job my partner does or for that matter her colleauges in other schools or how experienced she is or whatever insight she has in to the working of professional assesment processes she couldn't do the right thing when it came to their individual child.

 

I could make similar points regarding her abilities in comparison to a teacher in a special school. My partner could if she wanted to go and work in any sector of special education many believe she would make a very good chief advisor for primary special needs in the county. There is a reason though she prefares working in a large mainstream school. She has a reasonably large team to manage, she gets a wide variety of pupils on which to gain experience, she gets to teach her subject specialisms to a mixed profile of children, she has a direct input into a lot of secondary schools supporting students including 2 grammer schools which are at the top of national leauge tables. She has the opportunity to influence student teachers from the local training college through their placements, and to be honest she would have to take a big pay cut to move to a special school unless she was applying for the heads job which means she would have even less contact time with the kids.

 

Despite all this she still gets parents who are highly disrespectful and believe she is incapble of meeting their childs needs.

[Sally44]

I am not saying my personal opinion. I am quoting from the Code of Practice and Case Law as it stands.

 

Any professional at a Tribunal will be asked by the Panel to quantify and specify. Some local authorities have been requested to re-write ALL their Statements because they failed to do that. See the ipsea website for information.

 

I am not trying to criticise your partner at all.

 

The Tribunal Guidance to speech therapists actually states that "provision should be detailed as if resources were not an issue."

 

The Statement is not supposed to allocate or divide a budget to each child. It is about identifying and meeting the needs regardless of what budget or resources are available. I didn't make the law. That is how the law is and that is what parents have to work with.

[LancsLad]

The other option is of course not to work with the law but to use your energy to work with people instead.

[Sally44]

I think that mainstream school are put under alot of pressure from local authorities to include the child.

 

Some parents wish their child to remain mainstream regardless.

 

It would help alot of parents IF they were told as early as possible that their child may need a different type of placement. But the funding issues that involves, and lack of other placements, means that for some children they are held in a mainstream environment that they cannot cope in and where they do not learn.

 

If your partner believes a child is able to remain mainstream then I don't doubt her reasons for this. She has the expertise to make that decision. However the Statement should still identify each and every need and must quantify and specify so that the Statement meets the child's need whatever their placement.

 

When the LA has to fund provision over the individual delegated funding, I don't understand what the problem is for mainstream schools to quantify and specify what the child actually needs. That would save alot of time and money spent on going to Tribunal.

 

A report carried out [i think it was the National Autistic Society], found that many LAs used the Appeal process as a way of screening out those parents who did not feel confident in going to Tribunal. This was demonstrated by the number of Appeals, where the LA conceded just before, or on the actual day of the Tribunal. The only reason the LA would do this is because they know they will lose to go to Appeal, yet they wait right up until the last minute so that they can postpone having to fund that provision for as long as possible.

 

And LAs make parents appeal at every stage of the SEN process ie. they may refuse to assess, they may assess and then refuse to issue a Statement. They may eventually issue a Proposed Statement that is not worth the paper it is written on. And they know what they are doing. This isn't some naive office worker who does not know the system. It is local authorities systematically trying to frustrate the SEN process.

 

When you say that your partner sits on the Panel do you mean the SEND Panel that hears the actual Tribunals?

 

In my case with my son I did not meet anyone like your partner.

 

The file notes I found using the Freedom of Information Act found that both the Educational Psychologist and the Autism Advisory Teacher both told the LA and the school that he was not mainstream material. They both recommended that he went to an autism unit. The school SENCO said he was not suitable for that unit because the unit was for MLD, which he does not have. The SENCO said she felt he would regress in the unit. All this information was withheld from me. But it means that they were already admitting in 2009 that they had no suitable placement for him.

 

And as I've already said. I didn't get this placement just by making it all up. Both my independent professionals and the LA EP, NHS OT and NHS SALT all agreed with eachother when the Panel asked for their evidence. It was ONLY the LA inclusion officer and the SENCO that were saying they could meet his needs. Yet this same SENCO had said for over 3 years that she had no concerns.

 

Not only are those with an ASD individuals. So are SENCOs. No doubt some are good and some are bad.

 

And the fact that my son is now in school is proof enough.

Edited February 22, 2012 by Sally44

[bed32]

Even though we've only just started the process I recognise a lot of truth in what Sally44 says. The school, even though well intentioned, don't really understand ASD and so have been fooling themselves that they have been making progress when they clearly haven't.

 

The LA only blocks and procrastinates at every turn. They have been totally ignoring their legal obligations knowing that there is nothing anyone can do about it. It costs them nothing to force us to go to tribunal at every step of the way - indeed it saves them money. It has taken us more than a year from first saying we wanted him assessed to the LA agreeing to assessment.

 

There is no one out there who actually will act in the best interests of the child except the parents, and they often struggle to get the information and advice they need

[LancsLad]

I will ask her which pannels she sits on and let you know Sally. I am not saying that everybody gets a good experience with their current schools children or parents, nor have I ever said mainstream is the solution for all children, what I am trying to comment on is the culture which has now exploded around ASD and the diagnositic and statementing processes.

 

I think a lot of that culture promotes the concept that you have to 'fight' for your kids rights. In my experience when someone enters into a scenario with the belief system i am going to fight for my kid no matter what the only outcome can be it ends up in a fight be it physical, emotional or intellectual. Talking to my partner she says this is now the attitude she is faced with from parents on almost a daily basis. The media does not help here by promoting ideas of competition between schools and having to fight for places even in a mainstream situation.

 

A good example of this reality is that we live 30 metres away from neighbours who have a child with an AS diagnosis. When he was having a few problems at primary school his parents were very keen to seek advice from my partner all about the paper work, how they could get a statement etc... came across as though they were getting one up on the school by doing so. Though they are well aware that we have been foster carers for some very difficult children in general terms they have never asked for any suggestions on parenting. The sadest thing for me however is they do know I also have a diagnosis for AS and have offered that any time night or day they or their now 13 year old son wants to sit down and speak to me about the condition and how it affects me and what strategies I use on a daily basis I would be very happy to do so, they have yet to take up the offer but will pass comment about his schooling to my partner.

 

I am not saying you are making things up of course I am not, nor am I. But in my own experience open diaolouge in a respectful environment would help address a great many issues around AS, not all of them, but a great many. Personally I would love to be an AS mentor to schools, parents and individuals with the condition as i feel I have a lot of experience in a number of areas. My experience however nobody in the system is tuned into the prospect of such an idea they are all simply fighting their own corners.

[Sally44]

I certainly did not start out with the attitude of a 'fight'.

 

I was first approached by the nursery teacher and also my neighbours [who also happen to be SEN teachers], and they said his speech was so poor that he would struggle when he started school.

 

I approached the Health Visitor, who tried to observe him, but the nursery refused!

 

I went to my GP who said "if there are problems the school will pick it up."

 

And the school did pick it up. Again from my FIA search I found that the SENCO was concerned and observed him when he was only 4 months in school!

 

But the problem was that the GP should have referred me to the childrens hospital where they already have professionals who assess children. By letting him start mainstream, with no hope of him learning or coping there, his anxiety and stress has been out of control.

 

Because he had no Statement, and until he was 6.5, no diagnosis, meant that he received NO support at all in classes, eventhough the SENCO admitted he did not understand what was said to him, and they could not understand him.

 

So from problems first being raised by other people that knew my son when he was 3, it has taken until now [when he is 11], to eventually get him in a school that is suitable for him.

 

If he had been suitable for mainstream I would have kept him there. If he had been special school material, I would have been happy for him to go there [as my own sister went to a special school].

 

Unfortunately there are some children, as the SEND Panel said in their decision, that do not fit into either of those types of placement. They are the minority.

 

What that has meant for me is that I have had to almost become a solicitor myself. I have not been able to have a life of my own because he was sent home school frequently. For some months it was just a 3 day week. He was often sick in school and had to be at home for 48 hours. The last 11 months he wasn't even in school. The LA did arrange for a special teacher to take him to his former school, but he only tolerated less than an hour, twice a week, where he refused to meet with any other children and where he was being taught in isolating in the store cupboard. After 11 months of that - with then an additional diagnosis of an anxiety disorder and OCD - and sedative medication and Prozac, you can probably see that mainstream was just not an option for us.

 

But we were resisted all the way by the LA. And that should not have happened.

 

I too would have appreciated some open dialogue. I have found that teachers say very different things depending on which child I am seeing them about. At parents evening for my daughter [who is years ahead academically], I asked the science teacher how he differentiated the lessons for the whole class. He replied that he set the lesson for the brightest children to stretch them and had very little to do with those with learning difficulties, who were taught by the TA. He stated that those children are never going to use or get a science qualification anyway. He had no idea I had a son with SEN. But I appreciated that honesty, however hard it is to listen to, rather than someone trying to convince me that my son's needs can be met in a learning environment where everyone knows they can't. That is not meeting the child's needs.

[butterfly73]

I can only speak from my perspective.. and what I've learned thru my work (as a SALT and also skilled to work with sensory issues)..

Most of my kids benefitted greatly from working to balance their sensory input.. that allows other developments to become easier accesable!

Why? For you work with the body actively.. and literally they feel better within it... feeling better also means lessening anxiety!!

anxieties block growth.. get rid off anxiety and open a path..

 

Personally.. Uhm it took me 38yrs to finally see I have Aspergers (first dx in my family, while there actually are loads..) eventhough my work and the sensory info..

I have trouble with getting oversight ánd difficulty reading myself (especially emotionally)..

What did I learn recently?

* It is crutial to activate my body: walking or biking for at least 40-60minutes a day.. for it clears my head (from worries)

* For me also meditation works..

Though getting a daily new schedule down to maintain these useful things PFFFFFFFF, sooooo difficult!

I need others help/support in that.. to make it a new habit..

Old things will intervene within 1-2 weeks (or even days..)

 

by the way.. yoga is benefitial for body and mind.. and actually is NOT meant to be difficult or painful at all!

A good instructor tells you and helps you the body postures, which are actually stretching poses*

if anything feels uneasy.. listening to your body is móst important.. móre important than what the instructor says (and a good instructor will tell such!)

(*and with some that will block bloodflow in a small part of your body for a little while,

to get better flow after letting the posture go, which helps getting rid off more build up toxines in the bloodstream)

 

Getting a better balance with your body can also be achieved with Tai Chi, Karate, or other eastern stuff like Martial Arts..

There is a lot to gain thru that..

 

I wish you loads of luck in finding the best route for your son!

Love, B'fly

[Sally44]

I totally agree that an OT sensory programme reduces anxiety and helps with learning. But the NHS do not fund sensory integration therapy. We were given some exercises to do at home by the OT. But by the time he came home from school he was in such a state that you could not do anything with him. Often I was having to watch him like a hawk so that he did not self harm or attempt to run away.

 

Those exercises were just too little too late.

 

Now he has alot of OT input. The OT also goes with the class for swimming lessons. My son is alot calmer, more organised, more alert - and no headaches or vomitting for months. Some of his tics have disappeared, but we still have all the OCD behaviours and so CAHMS have said to try him on Prozac.

 

I'm not entirely happy about that. But we've run out of options at the moment and so we are trying to break the habit of these rituals. They are so disruptive, and my son says that he has to do them because his brain won't stop telling him to do it, until he does it.

 

He is obsessed with germs and contamination. If he wants to go to the toilet he has to completely strip "incase" his clothes touch something that has germs on it, or incase he gets a drop or urine on something, and he has to have tissue paper to touch everything. I hope the medication helps, and then I want to get some advice from clinical psychology for home and school so that we can both be working together. I would hope to have weaned him off the medication within a year. I know that medication alone is not going to solve anything, and the psychiatrist has said that if the main issues are not tackled, that the behaviours could return as soon as the medication is reduced.

[Sally44]

Going back to the original post, I just wanted to talk about the "gifted" aspect. Do you mean gifted due to his high scores in some skill sets? If you do, then yes he is capable in those specific areas - but completing a task is like completing a hurdle race, with each hurdle being a particular skill. Sometimes, although the child can complete some hurdles, they cannot complete all of them and that means that often they fail to complete the task for a multitude of reasons.

 

Assessments using standardised assessments are good because they highlight both the skills and difficulties as well as giving a standard score or percentile in those areas. [i think this is the kind of assessments you have had done].

 

There are specific subtests such as "formulated sentences" from the SALT Celf 4 assessment that is directly tied to the child's ability to access the curriculum. My son scored 1, then 2 on that where 3 is classed as severe. In many other areas he is around average or scores very high.

 

Again with reading/writing/numeracy etc, on cognitive assessments he scores around average on most tests, with definate difficulties with working and short term memory, yet his literacy and numeracy score are 4-5 years behind what it should be for his age.

 

Having 1:1 input from a dyslexia teacher is helping enormously. She also advises the class teacher about ways to present his work.

 

The school phoned recently and I think they are going to try to teach him to use the computer during lessons, because he is an absolute whizz on the computer.

Edited February 23, 2012 by Sally44

[Sally44]

"The other option is of course not to work with the law but to use your energy to work with people instead."

 

I just wanted to comment on the above, because that is what I tried to do. I have come across some very good professionals as well as some who simply tried to block things due to the funding issues involved.

 

The Autism Advisory Teacher was very good. She went against her employers to produce an addendum to her report where she stated he needed "a dedicated environment with class sizes of no more than 8 suitable peers." It was the LA that buried this and did not provide that information to me or to the SEND Tribunal. The Autism Advisory teacher was so upset about how my child's case was being handled that she phoned me a number of times on her mobile from the stationary cupboard simply because she felt she could not let her employer hear what she was advising me.

 

The LA also withheld the fact that both she and EP felt he needed to be placed in an autism unit.

 

How can you meet a child's needs when you withhold and bury information relating to that child?

 

The FIA search also produced emails from the inclusion officer to the Head of EP, the school EP, the autism advisory teacher, the Head of specialst teaching services and the LA Director of Commissoning services that stated "we have worded the Statement in such a way that we are not legally bound to provide it. This covers all eventualities."

 

All I can say is that the LA hung themselves from their own mouths. It proved beyond doubt that they never had any intension of meeting needs. They were producing an illegal Statement not by accident, but deliberately for the sole purpose of not having to provide the support or professional input he needed.

 

The LA, and some other professionals, were not being open or honest with me or the Tribunal Panel.

 

They were saying they had every intention of meeting his needs to my face, and then they were meeting together to discuss how they could appear to be providing for his needs, without having to actual provide anything.

 

There are so many instances I could give you. For example an inclusion officer that came to one of the Team Meetings we had in school about trying to return my son back into his former school. She talked about the kind of support they could provide, and said she would go back and discuss this with her manager and put together an application for additional funding which would be submitted to the LA Panel for approval. She said it would take her some weeks to do this because she wanted the application to be "meticulous" so that there would be "no delays in receiving this additional funding"

 

I was informed some months later that this Panel had not agreed this funding because the Panel had some further questions they wanted answering. So I phoned the parent partnership and asked them WHO was on the Panel on that day, I was told it was the inclusion officer [the same one that had submitted the "meticulous" application for further funding] and her senior manager.

 

SO - that means the Inclusion Officer put together an application for further funding and she presented it to herself and her boss who sit on the Panel. Then both she and her boss made the decision that they needed to ask themselves further questions before they could re-submit the application to themselves and approve the funding application they had submitted???????? So who is being open and honest?

Edited February 23, 2012 by Sally44

[LancsLad]

Sally a few thoughts on the points made by B'Fly and your reply.

 

Firstly I have found that exercise plays an enormous role in me managing my AS but I believe it has to be repetitive patterns which in effect fire off the same muscle groups, for me this includes swimming, cycling and running. The more I do the better though I do a good bit more than B'Fly due to training for my sport of triathlon, I would recognise that there is a point around 20 minutes into any session where I settle into the pysical rhythm of the activity it is not untill the 30 to 45 minute mark that i reach a mental calmness on a completly different level. To get to that point requires some time to build fitness levels but I believe exercise at this level has a regulatory influence on the bodies systems and gets things very much in balance.

 

It is interesting that I also do yoga which is not easy to master at all, I am a bit of a beginer in that respect, but again it is about having the discipline to understand my condition and to spend time on being the most productive individual I can be, and 20 minutes of yoga improves my productivity both physically and mentally. Sounding like a bit of a hippy but it is true.

 

In respect to Prozac and any drugs for that matter. My life really started to improve and become productive again when I got rid of all my medication. Prozac being very problematic in this respect. It is generally accepted that as an individual with AS the neurological pathways and the areas and intensity of my brain function will be very different under a CAT scanner than those of an NT. If this is the case why should I believe that drugs which relate to brain function and have undergone clinical trials in an NT population will work for me? There is now emerging research that indicates they may not and in fact they might even be counterproductive. My own GP is pretty unaware of what AS really means in respect to brain function, his knowledge in fact is very weak, yet he was prepared when I was at a point in my life and couldn't do the research myself to flood my brain with a whole array of drugs.

 

This might be a bit uncomfortable to read having a child with AS but I hope it makes a strong point. At one point in my life I was in a secure mental health unit on suicide watch and was faced with either taking a drugs regime voluntarily or being placed under a section order which would have mean't in an hour or so some burly men coming along and restraining me whilst the drugs were injected into my system. I saw this happen to one individual and it was not pleasant viewing. Everyone was saying please take the drugs it will be for your own good. When I look back at that time I do not even recognise the person as being me at all my personality had been taken away. I was very placid and easy to manage. You could view this as being in a holding state for my own good or as something which simply made life easier for those around me!

 

It took me two years to come to the conclusion that i wanted my brain back into its normalised state. This meant that life would be a bit of a roller coaster and I would have to learn to mange the low points which would be a lot deeper, but it also allowed me to get to my natural heights where I could be productive again and that meant being self reflective in coming to terms with my own issues.

 

My drugs of choice now are a lot of exercise, a good diet which includes natural supplements, work projects which interest me and allow me to express my talents at their natural level, and most of all my imediate family. Putting your child on anti-depressants might make him easier to manage but ultimatly that is something which he will have to learn to do for himself. When he comes to that point in his life the question is does a chemical support structure help or hinder the transition. In my experience it significantly hinderd the transition into developing the drugs of choice I now use. Things like Prozac are not easy to get off regardless of what people say there is too much anecdotal evidence out there which refutes the claims it is not adictive. As I have said there is evidence emerging that it can be counterproductive in respect to ASD conditions.

 

It is a hard call to make Sally and you will have to make that call, simply hope my thoughts offer a little bit of insight that there are alternative ways to go which do work but which are reliant on people being in a position to first understand their condition, then take responsibility that they can manage some of its negative effects and finally to take consistent action in their lives. How much of this you can do with your own child only you will have the insight to decide when weighing up the alternatives.

 

Best wishes.