AS not coping with school

[babnye1]

I think you are right bed. The schools might be out there but I'm not prepared to pack him off, he is just too vulnerable for that.

 

All the schools we have looked at are residential as well as day schools.

 

Mel - your poor son! What does he want to do?

[oxgirl]

Trouble is he has no idea what he wants to do it it's very scary. He hasn't any motivation or interest in anything. It's a frightening time, he's an 'adult' but not really an adult, he's very vulnerable too and just not ready to get out there into the world yet but options become less and less as they get older. All the holiday activities he attended when he was younger stop at 18 and even the social group he goes to stops at 21, which will be next year! He has no friends and nowhere to go and nothing to do and 10 weeks holiday stretching ahead of us. Ho hum.

 

~ Mel ~

[Canopus]

But I don't see that environment in AS specialist schools either. I see curriculums top heavy with cooking, arts, photography and D&T. I see low GCSE results with the occasional child achieving several passes.

 

I don't think mainstream is right.

 

But I have not seen an Indy SS that looks right either within our area. SpLD schools all reject him as too complex, AS schools seem to cover a culture of low academic expectation with art and life skills. I can't possibly understand how some of them get away with charging 60k for that.

 

My son has already rejected mainstream so I will have to create my own package. I can't see him getting anything particularly beneficial from school.

Is there much demand for specialist AS schools for kids with high abilities in maths, science, or ICT?

 

Over the years many parents of high ability kids with AS have said that they want to see high functioning AS separated from autism. The reason is that it will be easier to provide services that meets the specific needs and requirements of high ability kids with AS. Currently a high proportion of resources for autism are channeled towards people on the lower functioning end of the spectrum.

[bed32]

Is there much demand for specialist AS schools for kids with high abilities in maths, science, or ICT?

 

Over the years many parents of high ability kids with AS have said that they want to see high functioning AS separated from autism. The reason is that it will be easier to provide services that meets the specific needs and requirements of high ability kids with AS. Currently a high proportion of resources for autism are channeled towards people on the lower functioning end of the spectrum.

I am not sure about much demand - but there is certainly a gap in provision here as babnye is finding (as are we).

 

AS is frequently associated with giftedness in certain areas - I think many such children survive in mainstream - but if like my son the problems of ASD are too severe to make mainstream feasible the options become decidedly limited.

 

Most AS specialist schools cater for children of "broadly average ability" - which tends to mean being at average or below cognative levels but not so low as to be technically sub-normal.

 

I have heard estimates that about 5% of ASD children have the potential to go to University - but finding an education for them that allows them to achieve that potential is very difficult.

 

There are a few schools in the country (fewer than a dozen) that genuinely try to provide an education for bright autistic kids, and if you are not near one you have a serious problem.

[babnye1]

I agree and as our useless OT said 'you can't expect LAs to provide provision just for a few kids'. Mmm, so where are they supposed to go?

[Canopus]

Most AS specialist schools cater for children of "broadly average ability" - which tends to mean being at average or below cognative levels but not so low as to be technically sub-normal.

Is there a reason for this? Are AS schools designed to try to be everything to everybody? Is there an insufficient number of high ability kids with AS to establish schools specifically for them? Is it an issue of funding or unfavourable terms and conditions from the government?

 

I have heard estimates that about 5% of ASD children have the potential to go to University - but finding an education for them that allows them to achieve that potential is very difficult.

I assume that this figure you quoted covers the entire spectrum and not just the high ability kids who are let down by the system or have their potentials jeopardised by the lack of facilities for them.

[Sally44]

I think it is an issue of funding.

 

I think that those AS children that cannot cope mainstream, for whatever reason that is, need an alternative. One where they can be educated to their potential, but where they also get the therapy and specialist teaching and peer group they may need.

 

There is no such thing as the perfect school. The school my son is at takes Aspergers and those around average, or just below average. They have some historical pupils with emotional/behavioural issues and have recently opened a separate unit for acquired brain injury. I am happy with that. The alternative would have been him out of school. His difficulties are complex, with ASD, speech disorder, dyslexia, dyspraxia, sensory issues, anxiety, OCD etc. There is no way, as a parent, that I could provide a suitable education and meet all those needs. I am his mum, I am not a teacher, speech therapist, occupational therapist, physiotherapist, psychologist or psychiatrist.

 

At my son's school there is 1 or 2 pupils per year group that go onto higher education or university. One was taken by the Royal School of Art and now exhibits. He also has severe dyslexia and has a reading age of a 6 year old. This is what makes it so hard to place these children. They have such a spikey profile. They might be gifted in one area, and completely incapable in another. And each child has different strengths and weaknesses. I don't see how anything other than a specialist provision that meet those differences and needs and prepared the child for an adult independent life.

Edited June 21, 2013 by Sally44

[bed32]

The 5% figure came from our solicitors - I would guess that relates to children for whom ASD specific provision is appropriate (e.g. AS or HFA), so excluding the severe cases who require even more specialised/intensive treatment.

 

I think the problem for the bright AS chlidren is that the condition has tended to be under-diagnosed, so many children are kept in mainstream without the necessary support and branded as thick, or EBSD or the like. Also these days when they are diagnosed there is an increasing amount of support in mainstream, in the form of ASD units.

 

The majority of the specialist provision has grown up for children whose needs are so great that they could not possibly be considered in mainstream. While these tend to characterise themselves as being for pupils of average cognitive ability but in practice their pupils are not particularly able academically and in several of these schools the pupils tend to get no, or very few, GCSEs.

 

That leaves a small group of children, like my son and the OP's son, for which provision is very poor. My son has a very spikey profile, he is at level 7 in Maths and 6 in Science, but at the same time has severe Sensory and Social Communication difficulties. They require a nurturing environment that can address their issues, allow them to develop socially and provide intellectual stimulus through the academic teaching.

 

To me the academic side is very important for a number of reasons. Firstly, and most importantly, he loves doing Maths and Science - it keeps him interested and engaged with school. An environment that did not provide that level of stimulus would lead to him being even more disaffected from school. Then not to consider his strengths means that we end up defining him by his disabilities, not by his abilities. Developing his strengths can give build his self confidence and help reduce the risk of mental health issues. Finally to live a fulfilled independent life he needs to make the most of what talents he has - skills in some areas can make up for disadvantages in the social side. E.g. a computer programmer can still do a good job with very limited social skills.

[babnye1]

Absolutely agree with you bed about the importance of the academic side for our sons.

 

This is what will give my son his best life chances. He excels at history and literacy (interestingly working memory problems make maths much harder). But he is ground down by school life - especially mainstream life.

 

I feel he doesn't need 6 years of cooking, art therapy, OT to make him be able to sit in class and social skills groups. He needs to pursue his interests to the best of his ability, feel good about himself, pass exams and learn real life skills in the real world e.g going and shopping for himself etc.

 

I cannot see the point, save for child care reasons, in pursuing a Tribunal for a 60k placement at a school whose intake is so wide and varied that it will not challenge him academically.

[bed32]

In theory with the sort of staff/pupil ratio the specialist schools have it should be possible for them to deliver individual tailored curricula to each pupil. From what we can tell the better schools do manage this to some extent - it seems fairly common in Maths, and in fact the school that is currently top of our list does double maths GCSE, a thing than many mainstream schools don't do.

 

I seem to recall Unsted Park had a number who were good at history (in the sense of expected to get an A at GCSE)

 

We are looking at special schools now not only because he can't cope in mainstream, but also because he really needs some of the support and therapy that the specialist schools offer that are impossible to find in mainstream (for example Sensory Integration Therapy) and in our son's case we think the semi-structured environment of school outside core hours (be that residential or extended-day) will help him develop socially as well.

 

What is it about mainstream that your son finds so difficult? Maybe there is another way of approaching things.

[Canopus]

I attended a SEN residential school for EBD which offered a diverse selection of GCSEs to higher level in academic subjects including separate sciences. It did not offer any of the so called 'soft' subjects.

 

As a bare minimum I would say that a school for high ability kids would offer GCSEs in maths, English language, double science, ICT, and two other academic subjects to higher level at the end of Y11, and that's not counting more specialised subjects and courses, A Levels, or allowing students to take exams early. Can a SEN school for AS offer this?

[babnye1]

My son just learns and develops better out of school than in. Simple as that really. I am coming to the conclusion that school is just not for everyone. It may make life more convenient and it does provide child care, but educating a child with AS for a changing world, one where compliance, routine and being able to work 9-5 hours etc are not necessarily important.

 

I want him to follow his talents, work at his own pace, feel good about himself. I think this about my other child too but he actually gets a lot from school in terms of social engagement.

 

It's like the Ken Robinson thing about schools killing creativity and I think this is even more important and relevant with my son.

 

Also, we spend so much time applying provision like OT just to get them to fit into a system and 'normalise' them. Why? I'm thinking the whole system just doesn't accommodate him and he'd be better off out of it, being himself, than being trained to be a cog.

[oxgirl]

I think you're absolutely right that a lot of NT children gain a lot socially from being at school. Unfortunately, for our AS children the exact opposite is often the case. All my son learned socially from being at school was that he was 'weird', that he didn't fit in and that nobody wanted to be his friend. He went through six years of isolation and rejection and it permanently scarred him, I believe.

 

Before he started there he had two years home education and his self-esteem was still intact, all destroyed by the school environment we put him into in the mistaken belief that it would be beneficial for him to have the chance to gain GCSEs. Now he has a number of A grade GCSEs which are not worth the paper they are written on because his self-confidence and belief and social and communication skills are so broken by the experience he had to go through in order to attain the pieces of paper that he has not a chance of securing a job. I recently pushed him into applying for a job at Sainsburys, a new store they are building near us; they need hundreds and hundreds of staff, we were assured. Apparently though he didn't have the 'skills' to stack shelves for 10 hours a week. What hope does he have of securing any other job if he can't even get through an interview for that.

 

Sorry for rant, I am periodically overtaken by fury and frustration, today being one of those days!

 

~ Mel ~

[babnye1]

I feel for you Mel, I really do because it is so hard. If you can get them through education with some semblance of a sense of self and that is alright to be 'me' than that is so important. But it is not easy to know how to achieve that.

 

I feel, with my son, following his lead about what works might be the best way forward and he is learning and growing out of school.

[Sally44]

But as your child grows up, we all find that it is not just an issue about finding the right school or learning environment - because as Mel explains - what happens after school - what about HE, college or university and then what about work and then what about relationships etc.

 

So not only will you never find the perfect school - you also need to consider what happens next.

 

I know what you are saying about your son learning better out of school, and that maybe right for you and your son. But also as Mel has said, she has an academically capable young adult now, with no social skills, and therefore a real struggle to find an appropriate placement for further education, and then what about the work environment?

 

That is why I think that being in a school - one that also addresses, or attempts as best they can - to teach life skills and social interaction skills are invaluable. I don't think parents can do it all. And yes my son does have some upsets in school. But that is what life is like. And he/us have to learn how to deal with those upsets as they happen. You cannot remove your child from every potential upset. All you can do is try to get an overall environment where the childs needs are met and are understood.

 

That is also why I have fought hard for him to get some overnight residential. He needs to be with other kids. He needs to learn to be independent, but also how to go along with the group too.

Edited June 24, 2013 by Sally44

[Sally44]

It isn't letting me edit my above post, so I just wanted to add that, for me and my son, as long as the upsets are not all day and everyday then having some upsets/and having to resolve those social interactions and come to terms with his own and other pupils outbursts, can be a positive thing when the school are in control and are supporting the children and meeting their needs.

[bed32]

For our son our thoughts are very similar to Sally - he has problems with social interaction and we think these are best addressed in the semi-structured context of a school outside the classroom time. So we think that either residential or extended day school provision will be able to address his issues in the best way - although trying to get the LA to agree is a different matter.

 

For us at the moment, teaching is unimportant. He hasn't learned anything from school for the last couple of years - if he is interested in a topic he will teach himself from books, and if he isn't then nothing the school can do at the moment will make him learn. The key job for his next placement is to provide an environment in which he is prepared to engage. Once we get over those barriers then the quality of the teaching becomes important but there is not point having the best teaching if he won't go into the classroom.

[bed32]

I attended a SEN residential school for EBD which offered a diverse selection of GCSEs to higher level in academic subjects including separate sciences. It did not offer any of the so called 'soft' subjects.

 

As a bare minimum I would say that a school for high ability kids would offer GCSEs in maths, English language, double science, ICT, and two other academic subjects to higher level at the end of Y11, and that's not counting more specialised subjects and courses, A Levels, or allowing students to take exams early. Can a SEN school for AS offer this?

If you look at the results for most AS specific schools their GCSE results seem very poor - for most of them it is unusual for a pupil to get 5 GCSEs (but I don't know if the results tables might under-report results)

 

Only a handful of schools actually regularly get good grades.

 

A lot of schools will point out how much trouble ASD children have with exams, but the fact that some schools to achieve better results must mean either they have different selection criteria, or they manage them better, or both.

 

Either way I would prefer him to go to a school where to get A grades at GCSE is not unusual!

[oxgirl]

Sally, what I am saying though is that it is SCHOOL that destroyed my son's self-confidence and self-esteem and stunted his ability to learn social skills.

 

If I had kept him at home for those years I feel he could be a very different person, one who values himself and doesn't hate himself because of the constant rejections and isolation forced upon him by the other children, which made him feel rubbish about himself. He still could have gotten some GCSEs and would actually be able to USE them because he wouldn't be so damaged by the very experience of fighting to get them in an environment that was so very wrong for him.

 

I also feel that in many schools, be they residential 'specialist' schools or mainstream, the struggle IS all day and every day and that this can have a lasting and very damaging effect on some children. Some might conquer it and become stronger, but for others it is their downfall and they are destroyed, like my son. So please don't use my words to back up your own views, because I was trying to make the total opposite point.

 

I wish we had continued to home educate. He has his whole life ahead of him to gain academic qualifications but now I feel the damage is done re. his confidence issues; he is a depressed almost 20 year old with no prospects and the window for improving his self-esteem feels like it has closed firmly behind us.

 

~ Mel ~

[oxgirl]

Either way I would prefer him to go to a school where to get A grades at GCSE is not unusual!

 

But what if they get A grade at GCSE but have no social or communication skills so can't actually USE them to get a job, they aren't worth the paper they are written on. I would happily shred my son's certificates if he could have one friend, just one.

 

~ Mel ~

[bed32]

 

But what if they get A grade at GCSE but have no social or communication skills so can't actually USE them to get a job, they aren't worth the paper they are written on. I would happily shred my son's certificates if he could have one friend, just one.

 

~ Mel ~

 

I don't see why the two should be mutually exclusive - quite the opposite in fact. He will only do well either academically or socially in a school that can fully meet his needs.

 

It is very worrying that your son had such a negative experience of a special school - was it ASD specific or just a more general special school?

 

We start off only considering schools that have excellent credentials in managing HFA, then look for ones that also have an acceptable academic record. The resulting list is VERY short

[Canopus]

I think you're absolutely right that a lot of NT children gain a lot socially from being at school. Unfortunately, for our AS children the exact opposite is often the case. All my son learned socially from being at school was that he was 'weird', that he didn't fit in and that nobody wanted to be his friend. He went through six years of isolation and rejection and it permanently scarred him, I believe.

This comment on Wrongplanet sums it up.

 

Popular kids have the ability to learn social norms by observing others and then mimicking them. Unpopular kids lack either the ability,the desire, or the awareness of this process.

 

When four-five year old kids enter a classroom they look to see where the other kids are, and what they are doing. Once they figure out what the expected kid-behavior is, they then join in. When my son enters the room, he doesn't notice the other kids, but instead heads toward whatever catches his interest (machinery, paint, marbles, etc.) He isn't paying attention to the conventions, rules, or cues. He only joins in when made to, and then still doesn't pay attention to or copy the behavior of others. It doesn't even occur to him.

 

But the popular-kids-to-be are paying attention to each other. They size each other up, copy mannerisms and speech, and make each other the primary object of study. It's, I assume, what is meant when people say kids need to be in public school to learn social skills. But the problem is that the unpopular kids aren't learning these skills: they don't even realize they exist

 

http://www.wrongplanet.net/postt228143.html

 

That is also why I have fought hard for him to get some overnight residential. He needs to be with other kids. He needs to learn to be independent, but also how to go along with the group too.

In my residential school the out of teaching hours time was regularly used by bullies to take revenge on kids for events that happened during the day.

 

If you look at the results for most AS specific schools their GCSE results seem very poor - for most of them it is unusual for a pupil to get 5 GCSEs (but I don't know if the results tables might under-report results)

 

Only a handful of schools actually regularly get good grades.

 

A lot of schools will point out how much trouble ASD children have with exams, but the fact that some schools to achieve better results must mean either they have different selection criteria, or they manage them better, or both.

I dispute some of this because kids with AS are known to get good grades in mainstream or as external candidates. I think the problem is more with coursework rather than exams.

[oxgirl]

 

It is very worrying that your son had such a negative experience of a special school - was it ASD specific or just a more general special school?

 

 

He was at an ASD unit attached to a mainstream school. On paper; ideal. In reality; a nightmare.

 

~ Mel ~

[bed32]

I dispute some of this because kids with AS are known to get good grades in mainstream or as external candidates. I think the problem is more with coursework rather than exams.

 

Indeed - I was reporting what the ASD schools give as an excuse. To be fair the fact that a pupil is in a special school implies that they have more severe needs than can be met in mainstream and so you cannot directly compare the situations.

 

Instinctively I agree with you - I know my son has the cognitive ability to get reasonable GCSE grades. However to do so he needs a combination of a caring environment and quality teaching - and it is very hard to find that combination.

[bed32]

 

He was at an ASD unit attached to a mainstream school. On paper; ideal. In reality; a nightmare.

 

~ Mel ~

Ah yes - we considered that option but decided that it would not work in our case. Even though he could be in a unit he would still be in a school with 1000 other pupils - no way could he cope with that. Also there is no point in being in the mainstream environment if you can't do the majority of lessons in the mainstream environment - and again no way can he do that.

 

For us the ASD unit would probably be the worst of both worlds - while it holds out the possibility in theory of better GCSE grades the cost would be, as you suggest, just too high.

[babnye1]

That's how I read your post Mel - I don't see what this obsession is about school teaching life skills. It teaches school skills - how to cope with school. School isn't life.

 

I can teach my son more life skills in a day than he'd learn in a month at a school - whatever school - with a package of 'social skills' lessons aimed at 'children with ASD' which he may or may not be able to generalise to real life.

 

School teaches you to be at school and cope with kids. My son copes well out of school with adults. School destroys his confidence and self-esteem.

 

This much I know.

[babnye1]

I also think there is so much generic provision out there for 'ASD kids' when the variability on their needs is so great that this can be damaging as expectations may not meet reality leading to frustration and provision may not meet need.

 

I have already had one head of a Indy SS seek to tell me what was best for my son when she has never even met him. I couldn't deal with 6 years of that.

 

My son can withdraw very deeply into his shell and can be hard to fathom. I know ALL the progress he has made in life thus far is down to us. It has been in spite of and not because of school.

[Sally44]

Mel - I am not using your words for my opinions. I am using your words for your situation and experience. You said mainstream had not worked, and that ASD Unit attached to mainstream had not worked.

 

That is the same for my son.

 

My opinion on what to do about it is my own opinion and is working for us.

 

The point I was trying to make is that these struggles are not just about school ie. problems at primary, and then problems at secondary. It is life long. There is no perfect placement. And even if you do sort out somethting [whether that is in school or home educating], they have to eventually leave school, become an adult, get a job or move out and then what. It is at each stage of life that there are these same issues or problems running through them.

 

My son is learning life skills. It is making sense to him. He is making statements himself and learning how to repair things between himself and others. My son also had a very damaging time in primary. I don't want to home educate. I don't want to be the centre of the universe for all aspects of my son's development. I personally [my opinion], don't think it is healthy.

 

What are you doing now to teach your son these life skills if you think you can do it better than an educational institution, [and I am just asking out of interest, and not trying to challenge you]. Because learning is life long, and so if someone thinks that home educating is what will work for them and their child, then that is going to be a life long project too.

 

That does not mean that I sit back and let outside agencies attempt to teach him everything. Obviously I am involved with my son as any parent should be.

 

My son has not had negative experiences of residential. Maybe because he has a 1:1 and isn't left to his own devices. There are always adults around. The time when my son was being bullied was when he was being transported by taxi to and from school. And that child managed to bully my son [and another child in the taxi] eventhough they had an escort with them and the taxi driver! And I only found out about it via the parent of the other child. My son said nothing.

 

If we were to ever find ourselves in that situation where there really was nothing suitable, then I don't know what we would do. But for us we have found something suitable. From what the rest of you are saying, your children are capable of GCSEs. My son is average cognitive ability, but his co-morbid diagnoses - including severe dyslexia/dyscalculia - means his potential for taking examinations is currently unknown.

Edited June 24, 2013 by Sally44

[bed32]

This thread is illustrating the challenge of ASD provision. Our children have a lot in common but as parents we have very differing views of what the best educational provision is for them. That seems to be very much dependent on their specific needs, and also their experience in mainstream school.

 

It seems that none of us agree on what the right provision is for our children, so it is no wonder that we have so much trouble finding schools!

 

That said we are very frustrated that there seems one style of ASD provision that dominates the independent schools - and this does not seem particularly appropriate for certain children - if that is not the provision you want you are hard pressed to find an alternative

[babnye1]

I think it may also be because our children are all different so they will need different things. My frustration is that system does not really accomodate that at any level.

 

DIY I think. I get sick and tired of spending money and energy to fight to get provision in a form or by a person who hasn't the first clue about my son but works on a knowledge of 'types'.,

 

May as well expend time and money pursuing an option we have control over,.

 

School is to be got through. I will concentrate on his life.

[oxgirl]

For what it's worth, Babnye1, I think you're making the right decision. I wish we had made it for our son and we might be in a different place now. Good luck.

 

~ Mel ~

[JeanneA]

Hi Mel, like you the special school my son went to looked fantastic on paper but like the school your son went to, this school was also a nightmare. I should have definitely taken Glen out of School a long while before I finally did. I will always regret this. Glen was so unhappy and extremely anxious at School which resulted in his extreme aggression. I think now probably the first time in a very long time Glen is happy and settled. I wish the same for your son Mel, I really hope in the near future this will be the case. All we want is for our kids to be happy.

[KanDoKids]

is the TA they employing for your child or for the whole class? is your child statemented? If you can, try to find what level TA they are employing.

[babnye1]

Just an update. After holding two meetings last term with all professionals involved, it was agreed that my son should not to return to school and an education out of school package should be put in place.

 

LA did nothing but it went to SEN Panel last week and they have said they want him 're-integrated' back to school and have asked CAMHS to do an assessment. This is despite the clear recommendations from everyone at the meeting including school that it is not in my son's interests for him to return.

 

CAMHS have already said TWICE that they do not need to be involved as my son does not have an anxiety disorder (he is fine out of school) he just needs his educational placement sorting. They discharged him after all professionals agreed on a package.

 

So we are now facing a judicial review for failing to educate.

[Sally44]

Can you go to Judicial Review on that issue? Is there case law to back up your situation?

[babnye1]

He has been out of school since May with no educational provision put in place and no amendments to his statement so he is not receiving any education. That is the basis of the JR.

[oxgirl]

What if you deregister him yourself and home educate, that way you are providing education. You'd have to do it alone though without intervention.

 

~ Mel ~

[babnye1]

I have been educating him myself effectively since I started to post on here.

 

We have even paid for some tutor sessions.

 

I work and I need to factor that in too. I have nothing against HE but not sure why the LA shouldn't stump up for some of the funding. It's not elective when there is nowhere else for him to go.

[oxgirl]

Yes, I understand where you're coming from. Not sure why they're accusing you of not educating, though, if you can prove that you have been educating him yourself and show the work he has produced. I guess as long as he is not deregistered, though, the education has to be 'official' and delivered by 'professionals'.

 

~ Mel ~

[babnye1]

No one is accusing me of not educating him. Sorry if I am confusing thing. I am having to take action against them for not providing an education.