Diagnosis and then what???

[frogslegs]

Today I went through 3di and my son now has an official diagnosis of Asperger. What it means in practice, I am not sure, as I am told that no plan is going to be put in place for him unless the school decides to do anything. When I asked what happens now I was told a review of progress in 4 months time by paediatrician but that's it from the NHS. Progress, what progress? When there is no help planned I cannot see what progress we are talking about?

It seems that we are going to fall into a sort of loophole where he is not 'bad enough' to get a statement and therefore no help is available for him. It is scary. The 'problem' is that currently DS does not have many school problems. He is a delight to the teacher and on the whole is doing well. Two main issues: coordination and ABYSMAL social skills. I can't accept that there is no help around for somebody who has specific needs but is still sort of coping.

 

I was handed leaflets for all sorts of workshops. Now fair enough, I need to be informed to care for my son properly but I had the strong feeling that that was going to be it, I was going to care for my son without any outside input, bye and good luck to you and that seems unreasonable. If I am the one who is solely supporting DS this is going to ruin our relationship. The lady was trying to convince me to read books that said 'for professional' on them and I thought 'I am not a professional and I am not here to do your job!'. Am I being unreasonable?

I feel angry and lost.

Mel

[Sally44]

I know the feeling. I was given a diagnosis of autistic spectrum disorder and sensory integration disorder and given a leaflet about the Parent Partnership as I left the Developmental Paediatrician's office. That was just over 2 years ago, and it took three years in total (from when I first raised concerns) to get a diagnosis.

I would recommend you get in touch with your local Parent Partnership (through your local council), and also the NAS and find out about any courses they are running about the special educational needs process.

What stage is your son at now? Is he on School Action, School Action Plus etc.

Although he has a diagnosis of Aspergers, and therefore it appears to be automatically assumed that academically he will be okay, you still can push for his needs to be met.

You have to start by always putting every request in writing and always getting written responses. You say he has problems with co-ordination and social interaction. Has he been assessed by a Speech Therapist. It is the SALT that is responsible for social interaction and play skills - it took me 3 years to find that out!

School need to be setting IEP or MEP targets around his needs. Education is not just reading and writing. So, if he has difficulties with social interaction the school should ask the SALT to come and assess him to see what he can/cannot do. That should involve identifying targets on his MEP and putting together programmes and supports to meet those targets. The school can also use systems/supports such as Circle of Friends, Buddying, Social Skills groups etc. You can also look into an ongoing assessment process called SCERTS which the SALT should be aware of, and which is a very good way of monitoring your child's particular social strengths and weaknesses.

Do you feel that his present school are willing and able to meet his needs? Through dedicated funding they are obliged to support him in his areas of difficulty. That might include structure during breaktimes or access to dinnertime clubs. If they are being resistant, look around your area for other schools that have more Aspergers pupils, and where they have the abovementioned systems already in place.

Difficulties with co-ordination need to be assessed by an Occupational Therapist. Ask for a referal. It may take up to 2 years to see one. Again, some schools with experience of children with Aspergers/ADSs have physical movement programmes already in place.

Although a child with Aspergers may not typically get a Statement, that does not mean it is impossible. You have to have evidence of complex needs. So you need to tease out all his difficulties and not just lump them under the umbrella of Aspergers. For example you have already mentioned Aspergers and co-ordination problems. Is that dyspraxia, or associated with sensory issues. Poor physical co-ordination can sometimes be mirrored with poor mental co-ordination eg. planning, sequencing, organising etc. What is his language and communication like. Is his expressive speech okay, but he struggles with receptive speech. Does he take language literally. Google Semantic Pragmatic Speech Disorder to see if that is relevant. Does he have language processing delays, or problems with auditory memory etc. There are a whole range of difficulties associated with Aspergers or ADSs that your son may have as you begin to delve a bit deeper into how it affects him.

The longer the list of 'needs' the more chance you have of the LEA agreeing to a Statutory Assessment.

I'm afraid that a diagnosis is not the end of the struggle, but is usually the beginning. But you will achieve results if you get advice from the NAS, and start a methodical approach to meeting his needs.

You can also involve Social Services for a carers assessment, and for them to allocate a social worker if necessary or for them to provide sitters so that you can go out, or for someone to accompany him as he gets older to the cinema for example.

Join a local support group so that you meet other families and children in the same situation. They will have alot of help and advice relevant to your area.

After a couple of years of banging my head against a wall, I did cough up the money, get independent reports and a solicitor and went to an Educational Tribunal and won everything we were asking for. It wasn't cheap. But there is alot you can do before you even consider that stage. And whether it goes well or not, that is still evidence that you can use.

Make sure that MEP targets are SMART so that you can see if he is making progress or not. And it is expected that a pupil will make average progress in all areas over an academic year. If he isn't achieving targets, or losing skills etc then that is evidence that the school needs to get some outside professional advice.

The reason that parents push to try to get a Statement is because it is a legal document and everything it contains has to be done by the LEA. However most Statements are not worth the paper they are written on (if that makes you feel better!), because most have not been completed according to the Code of Practice which states they should specify (in terms of hours of support), and quantify in terms of staffing (ie. which professional does what and how often and when will they review progress).

So just start getting clued up, start asking the school how they will support his needs. Contribute towards MEP targets. Always send letters etc.

Sometimes it is very simple things that can make a big difference. My son also struggles with social interaction, although he does want to interact. One thing they are working on at the moment is on him learning the names of the children and adults in his class. He really struggles with this. Usually he addresses people by saying 'excluse me' or 'I want to tell you something'. But when you are running around the playground you need to be able to shout the child's name to get their attention, you can't run behind them shouting 'excuse me'. So this very basic skill has had a huge impact on his success with social interaction with the other children in his class. So this was a target in his Social Skills Group, and also on his MEP and the SALT put together a programme for the TA to work on daily in school in the classroom and in the playground.

 

As private reports are expensive there are other ways to obtain evidence of need. For example you can find a private play therapist and they can do some work with him over the next 6 months and you can ask them to write a short report about his difficulties with social interaction. There are Play Therapists that work with children with ASDs, and you do want one that has specific knowledge in this area. Although that will cost money, it could be worth it to get you some evidence that the SALT needs to be doing more to help this area of need - if you are finding that they are doing nothing. But don't be afraid to write to the SALT department and ask them why you son has not been assessed for his social interaction and play skills as difficulties in this area are part of his medical diagnosis of Aspergers. Sometimes that is all it takes for something to happen.

You can also use clubs such as a trampoline club to see if that helps to improve or helps to identify co-ordination difficulties. I found that my son found it difficult to process the verbal instructions into the physical movements and to sequence them in the right order. That difficulty is not just relevant to trampoline classes. That same difficulty will show itself in a classroom and learning environment.

 

[Karen A]

Hi frogslegs.It is very much a time of mixed feelings just after AS diagnosis.Ben was diagnosed AS a few months ago also after the 3di.I had been around on the Forum for a couple of years and so was very aware that Ben might meet the criteria for a dx however OH and myself have still felt a bit all over the place. <'> <'>

We have very good support because our CAMHS is very unusual in that respect.It happens often on the Forum that people are offered little in the way of support which is very frustrating.

OH and myself went on a HELP course the other week.It is run by the NAS for parents of children who have a recent diagnosis of ASD.We found it very helpful not just because the information was excellent but also because it was great to get to know other parents who are in the same situation.It might be worth attempting to find out if one runs in your area.

 

There is lots of useful information on the Forum.Many people have been down the road of obtaining support in school.So you are not alone.

It is worth thinking that the process of supporting a child who has an AS dx is a marathon rather than a sprint.I also felt that I needed to do everything when I first found out that Ben had dyspraxia [his original dx] but 3 years on am still plodding along.I guess what I am saying is do give yourself a little time to take in the news.

Edited to add that Ben is 10 too.Karen.

Edited April 10, 2009 by Karen A

[bid]

A really good place to start might be one of Tony Attwood's books:

 

http://www.amazon.co.uk/Complete-Guide-Asp...4403&sr=8-1

 

http://www.amazon.co.uk/Aspergers-Syndrome...4403&sr=8-2

 

Please don't be put off by the term 'professional' in the title of the second book...his books are the most readable and easily accessible books about AS for those starting out.

 

Try and be gentle with yourself, it's a funny old time around diagnosis. Maybe get just one book to start with, rather than trying to read everything you can find.

 

Good luck, and don't forget we've all been exactly where you are today and really do know and empathise with how you are feeling <'> <'>

 

Bid

[frogslegs]

Guys I think you are fantastic and this blog is really a lifeline for me... I have printed your answers and I need to talk to the school after the Easter break about an IEP and following Sally's advice I have looked up Parent's Partnership which is something I have never heard of before. I find all this the more difficult as my husband who is probably an Aspie as well cannot see what the problem is. In other words complete denial, so whatever I read is poopooed as psychobabble. He came once to the paediatrician with me and I swore never again as he was saying no to anything the woman was saying. And yet the problems are numerous!

It has taken a year since our first referral to get the diagnosis. This included an assessment at school by SALT and an assessment by OT + 3di. DS has been going to movement gym for two years and there has been attempts at setting up a friendship circle so the school has come up with some stuff. The thing that got me is the fact that the diagnosis fell like that yesterday but no plan was offered by the NHS. I was given HELP leaflets so I have sent away for that today and also paid to be a member or N.A.S. as it looks like it is going to be a long road. I have read Attwood's bible but what I was told to read were books by Winslow Resources which have lesson plans for teachers. This is pushing too far.

I have had a very weepy day today but my son is going away to camp tomorrow and I am going away for a few days with my daughter. So I will have time to think clearly

Thanks again all of you for your very precious help <'> <'>

[Sally44]

It is near impossible to get services specified without a Statement. For example it took my a 2 year wait for my son to be seen by an OT for Sensory Integration Disorder (part of his initial diagnosis), they assessed him and found areas he needs work on, but they have not put a programme into place and would not comment on the level of support they can provide to children with ASDs in general or my son in particular. He does go to a movement gym run by the school. And he does have a listening therapy that is from OT. OT commented that my son has put together his own strategies for dealing with the sensory issues that he has, which is true. And they won't specify because then parents will try to keep that service at that level. So they never promise anything. What you need is evidence of need for them to assess, and then they need to put together a programme to meet that need, and they should send you a written version of the programme. Sometimes it is hard to even get that ie. they will specify the need, but then make no or little or vague recommendations on how those need should be met. But you need to know who should be doing what, how often and for how long and how it will be monitored. If you son't know that you have no idea if they are meeting the need.

So always ask in writing and always get them to reply in writing as well. If you know a certain professional is going into school then send them a letter of your concerns and ask for them to assess for that whilst they are in school and to make recommendations. You then have evidence that you have identified needs and asked for them to be assessed. If that isn't done that is still evidence. If it is done, but without recommendations you can send a further letter asking them to make recommendations or put a programme into place that will meet that recognised need. It does mean you are continually checking, double checking, writing letters etc - so it is a long term jog type of approach.

And it is not impossible to get a Statement for a child with Aspergers. But you do need evidence of complex needs. So you need to take away the umbrella diagnosis of aspergers (in your head), and identify every single area of difficulty he has, the sum total of which may be complex needs.

Nothing is going to be handed to you on a plate. Resources are very tight. Professionals are few and far between. But that doesn't mean it is okay. Your child has rights (which you can check with the Parent Partnership and the NAS). Unfortunately the parents that get clued up and start asking for what their child needs and keeps pushing for it and getting evidence to support their requests, sometimes to the extent of an educational tribunal, are the ones that get the support. It isn't fair, but we didn't make the systems. Unfortunately LEA inclusion officers seem to have become budget control officers. I know there isn't an endless amount of money. But that also is not my fault or my system. There is money, and other people decide how it is spent. There is law that says how a child's educational needs have to be met. Law always wins. But the LEA are not legally required to do anything under School Action or School Action Plus. It is only the Statement that is legally binding.

The NAS (and sometimes the Parent Partnership) run day seminars about the SEN process. The NAS also does Help 1 and Help 2 courses for parents of children with ASDs. They also have seminars on all kinds of other issues as well that you can attend. So, over time you will become your childs Personal Assistant/Advocate, but there is no one else who is going to do that job if you don't.

[wasuup]

Thats interesting!

 

The OT only visited my son at school and listened to the teachers main area of concerns, saw him 3 times at school, gave school and home a pack of stuff to do, then did a report with further goals and how to achieve them, saying that she had discharched him. This is without visiting him at home and asking me what his needs are as his teacher missed out a few things.

[Sally44]

As my son now has a statement, we did get it included in the Statement that the OT would review how he was doing in school on a termly basis. At the moment he has alot of input going on, and therapies and things being put into place. So I haven't pushed for yet more stuff at the moment. But when they review next, I want them to identify how my son uses his own strategies to deal with sensory issues. And I want that to be built into his daily timetable.

For example he has access to ear defenders, and one of his targets is to get him to identify when he will need them. I want to speak with the OT about that because (a) sensory perception varies dramatically between hyper and hypo. So the same sensory experience might be painful on one occasion and painful on another. I don't know how they expect my son to be able to make that judgement??? I prefer that he is reminded prior to something that he might need them, and to take them incase. My son will remove them if he doesn't need them. If he does need them, and doesn't have access to them he will become over stimulated, retreat into himself, and you won't be able to do anything with him for the rest of the day. He also uses spinning and bouncing to get him ready to do tasks. This is clear to see in the home environment and was witnessed by the OT. Eg. when asked to do a certain piece of work he might get up and spin, then sit down and do it. If you stop him from spinning he can't do the work. Or he may get up and bounce around 5 times and then get off and complete the work. I didn't know that this behaviour was infact good and preparing him for work, because a child trying to do this type of stuff in class would be asked to sit back down. But the OT was very happy that he was using such strategies, which do appear to work. But we now have to see how we can incorporate that kind of thing into the classroom environment. He also likes deep pressure at times and the OT also suggested work breaks that might include pulling on a piece of rope, or pushing against a wall. My son tends to lose body sensation, so I think alot of these things are meant to ground him again.

If the OT has recognised difficulties in your son to the extent that they have given a programme for school and home then I would be writing to them to ask (a) has the person completing the programme in school been given any training in how to do this? And when will they review progress? OT don't like ongoing commitment. But although they are NHS, and not LEA the LEA is supposed to fund them for any input over and above what they would normally provide. But again, I think that only applies through a Statement because it is legally binding. I don't think the LEA has to provide funding at school action or school action plus - but you would need to check that with the NAS. It is all down to evidence again. My son is getting a listening therapy because I had evidence that my son has Auditory Processing Disorder (which I pushed for through the SALT). Although APD is a recognised medical condition the NHS cannot diagnose it (they have no assessments), or provide therapy for it. But there are private clinics that do assess and give out programmes. They cost money. But they do take NHS referals. So my GP supported my application to the PCT for this therapy at a clinic in London. The PCT suddenly decided to send one of the community OTs on a training course in listening therapies, and my son is receiving it. So, it is worth following things through and asking in writing.

If you don't have a Statement this area of OT is further evidence of complex needs. But the LEA will probably let it get to Tribunal stage before they would agree to OT being included in the Statement. And if you did get to that stage, involve the NAS to make sure the wording is right. On my sons' statement he gets a weekly SALT session for a qualified SALT with daily practice with a TA. The reason we got that level of support was because he has such severe and complex needs regarding speech and communication that a TA could not be expected to run the programme on a termly basis on their own. The TA has to sit in on the weekly SALT session to see how it should be delivered and then practices it daily both in the classroom and playground and in the Social Skills Group. Although this input is higher than any other child in his school (including those in the autism unit), I feel that it is not only benefitting my son, but also the schools experience and will have further benefits on other children. The SALT also has to contribute towards the Social Skills Group that my son attends. Previously there was no SALT input. TAs are not qualified to set targets or put programmes into place for Social Interaction. That is what qualified SALTs do. So now all the children in that group benefit from the extra provision I obtained for my son. It shouldn't be like this. But we didn't make the systems, so we have to work with the systems available.

[Sally44]

Me and my typos!! I meant to say that the same sensory experience can be pleasurable on one occasion and painful on another. (that in itself can be responsible for some of the tantrum like behaviour our children show). They don't know how it will be until they experience it. My son can set the TV volume very loud or so quiet that I cannot hear it. For him he is just setting it to the level he needs to hear it. And that variation can be experienced in any or all of the sensory channels.

My son also has difficulties multi tasking from a sensory point of view. He easily loses body sensation. So if he is looking at something or someone speaks to him, it is common for him to drop something he is holding. This has a big implication for his ability to write during classroom environments. If he cannot feel body sensation, and also has problems with motor planning, an accumulation of sensory input and overload is going to make that an almost impossible task for him.

[wasuup]

Can anyone tell me what is it when they have difficulties thinking of their own ideas on a topic (well being completely unable to) and answering questions? Would it be something to do with Dyspraxia, Auditory Processing or just immature Expressive Language skills?

 

[Sally44]

Could be any of those. It could also be down to difficulties with imagination. Those on the spectrum are typically supposed to have difficulties with imagination. They can tell you about stuff they have already seen or heard. But not make it up. Some can, but again it is not at the same level as peers. Sometimes at bedtime I encourage my son to make up a bedtime story. We do this by taking turns at adding to the story. So I might start off by saying 'once upon a time', then he will say 'there were three ghosts'. Then i'll add to it eg. 'these were three pirate ghosts'.

These difficulties can also tie into Theory of Mind. To write a story you have to have different characters in your mind and you have to have a plot and think about who knows what. There are tests you can do regarding theory of mind. One is to have two dolls (or actionmen), and a bar of chocolate. You put actionman 1 and actionman2 on the sofa. You tell the child that actionman 1 has some chocolate. He eats some of it and puts it behind cushion A on the sofa and leaves the room (you take actionman1 out of the room). You tell the child, whilst actionman1 is out of the room, actionman2 gets the chocolate, eats some of it and puts the chocolate behind cushion B. Then you bring actionman1 back into the room and ask your child 'where will actionman1 look for the chocolate?

A child with theory of mind will say behind cushion A (because he didn't see actionman2 move the chocolate).

A child with poor or absent theory of mind will say behind cushion B (because he doesn't understand that actionman1 did not have access to the same information as he did).

You can see how difficulties with this type of knowledge and thinking is going to make it very difficult for them to write a story.

And as you say, there can be speech difficulties in accessing the words the child needs to express what they want to say.

Or it could be disordered thought processes, or thought sequencing problems.

There really is a long list of possibilities.

Can you give an example of difficulties answering questions?

It is usually very hard to get any professional to do indepth assessments to identify exactly where the difficulty is. But it is worth asking. There are different ways of trying to improve thought processes depending on what the root of the problem is. For example you could encourage your child to think about outcomes by reading a book together and when you get to a critical part ask him 'what do you think happens next'. If he can't come up with anything, give him a couple of options. If it is problems with expressive language the SALT should assess and have some targets to improve that. One thing they do with my son is he takes an object or picture into school for his Social Skills Group and the other children ask him questions about it. And when it is another child's turn he has to think of questions to ask the child (he tends to find that harder).

[wasuup]

Well he used to put his hand up to answer a question in class then just giggle, say nothing or that he didn't know when asked. Now this has improved as he doesn't put his hand up as much and if he does he can sometimes give an answer (so long as it is to do with the here and now not in abstract terms) be it a little disordered such as in pronouns and adjectives being mixed up or copied of another child's answer. Also he finds it difficult to ask questions so his teacher is trying to give him a Bank of who,what,why type of questions to learn. Off shoot of that is he can now ask the odd question but there is seemingly no reasoning behind the question and no real interest in the answer. So for example I am driving and he pipes up "What is your favourite moment", "Do you like the sky" ect. The only idea he has had to talk about in class himself was the teachers example which he read out from the white board.

[wasuup]

It is difficult froglegs when all you really want to do is enjoy your child rather than feeling that you have to be everything the professionals should be and fight to get the help and suport your child needs and deserves. <'>

[frogslegs]

Sally you are completely right. I managed to get my son diagnosed in one year because I harassed the secretary weekly until we got all the appointments that we needed. Everytime I was told that there were other people before me, etc and ended loosing my temper and saying it was not my problem but theirs and that my problem was my son's health. Within two days I had my appointment.

 

Unfortunately the parents that get clued up and start asking for what their child needs and keeps pushing for it and getting evidence to support their requests, sometimes to the extent of an educational tribunal, are the ones that get the support. It isn't fair, but we didn't make the systems. Unfortunately LEA inclusion officers seem to have become budget control officers. I

 

[frogslegs]

Thats interesting!

 

The OT only visited my son at school and listened to the teachers main area of concerns, saw him 3 times at school, gave school and home a pack of stuff to do, then did a report with further goals and how to achieve them, saying that she had discharched him. This is without visiting him at home and asking me what his needs are as his teacher missed out a few things.

When my son was seen by OT long report written in which she said my son was lovely! How useful!!!! Then list of recommendations for the school including use of a laptop, got given special cutlery, special pens+pencils and..........books to read, AHHHHHHHHHHHHHHHHHH

[wasuup]

When my son was seen by OT long report written in which she said my son was lovely! How useful!!!! Then list of recommendations for the school including use of a laptop, got given special cutlery, special pens+pencils and..........books to read, AHHHHHHHHHHHHHHHHHH

 

 

Exactly how I feel-I have 3 other children one a demanding 2 year old who thinks hes the boss, my boss to be exact-what am I supposed to do....

[Sally44]

Well he used to put his hand up to answer a question in class then just giggle, say nothing or that he didn't know when asked. Now this has improved as he doesn't put his hand up as much and if he does he can sometimes give an answer (so long as it is to do with the here and now not in abstract terms) be it a little disordered such as in pronouns and adjectives being mixed up or copied of another child's answer. Also he finds it difficult to ask questions so his teacher is trying to give him a Bank of who,what,why type of questions to learn. Off shoot of that is he can now ask the odd question but there is seemingly no reasoning behind the question and no real interest in the answer. So for example I am driving and he pipes up "What is your favourite moment", "Do you like the sky" ect. The only idea he has had to talk about in class himself was the teachers example which he read out from the white board.

 

Have you considered whether your son is actually using delayed echolalia? He sounds like he uses quite alot of pre-heard phrases etc, and he uses them in the appropriate moment, but the meaning is not necessarily correct or relevant. There is alot of evidence of delayed echolalia being used in this way. Ie. the child knows how a conversation should go to and fro, but they don't have the language or processing skills to do it in real time. So when asked a question they might give a totally unrelated answer. Or they may want to talk with someone, but may say a strange statement or ask a strange question because they don't know a more appropriate way to initiate conversation. He is also putting his hand up in class, showing he knows that that is something that is done when the teacher asks a question, and he knows that he has to give an answer, but he doesn't necessarily know the answer to the question and so he says something unrelated or cannot retrieve an answer in the time allocated for him to do so. The fact that he isn't really that interested in the answer would appear to indicate that he doesn't really understand the meaning of the questions he is asking.

 

My son also mixed up pronouns and took nearly 2 years to get them right. He also used to copy alot of the other children in his class. He used to physically copy them ie. he didn't understand the instructions the teacher was giving out and would watch and copy what the other children were doing. He also copied their answers during things like carpet time when everyone has to give an answer. I have sat through some of these sessions and I know that my son had absolutely no idea about what he was being asked eg. say something you like to do - and he would say what one of the other children had said even if it was something that I knew he absolutely hated! But it was an answer he could give in the timeframe allowed, because if you really wanted my son to answer a question like that you would have to give him a couple of minutes to think about it before you got an answer - by that time the lesson has finished.

 

As your son has difficulties dealing with anything other than real time, however his language processing skills may not work well in real time, causing him to almost be out of sync with everyone else, and yet not be able to function in any other time period than here and now? Does that sound possible?

[wasuup]

I knew that he copied word/phrases sometimes and repeats what he says himself sometimes it is interesting to think that he may well be using language in this way. He was 1/2 watching/listening to Dr who (bbc 3) tonight (well last night seeing as its now Monday )and kept repeating phrases from that and he always repeats the auto messages on lifts whenever he goes in a lift that speaks. He also copies the action of other children say if a few of them were asked to go to the toilet he would also go even though he hadn't been told to and just follow them, or think it was playtime and go and put his coat on. Although I don't rate the management team in the school much his Teacher and TA really try their best without much support. When I mentioned to them that the EP was supposed to be coming to assess him his Teacher let out an impromptu "oh good, at last". His Teacher said she hadn't had a child quite like him before.

He did tell his Teacher though that we were going to Butlins last 1/2 term on holiday around the time that all the Butlins adverts were on. Apparently he described it really well and they were convinced we were going. His Teacher even said to me "Have a nice holiday at Butlins"! I was like err what holiday we are not going anywhere. So some connections seem to be being made somewhere......It is all very confusing!

[wasuup]

Thanks for your pm Sally. I am posting this here that a friend emailed me in case it helps anyone regarding semantics.

 

Semantic Disorders

(may occur as part of dyslexic profile, receptive language disorder, central auditory processing difficulty or dyspraxia (D.C.D.), independently of pragmatic disability)

 

1. Difficulty following instructions.

 

2. May repeat all/part of complex question/instruction rather than respond.

 

3. Looks hard for non-verbal clues to aid understanding.

 

4. May use survival strategies to cover up poor understanding e.g. conversational fillers (‘oh, what was it again...?’), change of subject, opting out.

 

5. Poor verbal memory (auditory memory span may be closer to C.A.) as such poor understanding of language involved. Affects reasoning, deduction.

 

6. Often very slow to process language - extra time can make a difference.

 

7. Poor attention - better if 1:1, and when activities do not rely on language.

 

8. May read without true understanding and write but not spell. (Poor phon. awareness)

 

9. May have good mechanical ability for maths (can learn a strategy and manipulate numbers) but very poor at mathematical reasoning and mental arithmetic.

 

10. Uses other peoples ideas - cannot generate new ideas/alternatives easily.

 

11. Poor knowledge of word-meanings, particularly abstract concepts.

 

12. Tends to learn extreme concepts with few shades in between e.g. uses happy and sad, but not pleased, excited, disappointed.

 

13. Poor awareness of time-orientation and time-sequences though may have some rote-learning without true understanding. Relies on copying others to follow routine.

 

14. Poor semantic-links (affects classification, association, analogy, word-relationships and inference).

 

15. Word-finding difficulties - may appear dysfluent, use neologisms, circumlocute, make phonological errors or over-use vague vocabulary and pronouns e.g. thing, those.

 

16. Off-target responding - poor comprehension of question words; latches on to key-words rather than whole sentence-meaning. Difficult to maintain conversation.

 

17. Poor syntactic comprehension leading to syntactic errors at clause rather than phrase level. e.g. leaves sentences incomplete or incorrectly sequenced.

 

18. Uses word-endings but inconsistently e.g. changes verb tense during continuous narrative. Morphological errors increase as sentence becomes more complex.

 

19. Lack of saliency - can’t see main point of passage or use language concisely. Poor organisation of ideas (and often has general organisational difficulties).

 

20. Prefers to play with younger children or alone as can’t keep up with peers.

 

[Sally44]

Thanks for your pm Sally. I am posting this here that a friend emailed me in case it helps anyone regarding semantics.

 

Semantic Disorders

(may occur as part of dyslexic profile, receptive language disorder, central auditory processing difficulty or dyspraxia (D.C.D.), independently of pragmatic disability)

 

1. Difficulty following instructions.

 

2. May repeat all/part of complex question/instruction rather than respond.

 

3. Looks hard for non-verbal clues to aid understanding.

 

4. May use survival strategies to cover up poor understanding e.g. conversational fillers (‘oh, what was it again...?’), change of subject, opting out.

 

5. Poor verbal memory (auditory memory span may be closer to C.A.) as such poor understanding of language involved. Affects reasoning, deduction.

 

6. Often very slow to process language - extra time can make a difference.

 

7. Poor attention - better if 1:1, and when activities do not rely on language.

 

8. May read without true understanding and write but not spell. (Poor phon. awareness)

 

9. May have good mechanical ability for maths (can learn a strategy and manipulate numbers) but very poor at mathematical reasoning and mental arithmetic.

 

10. Uses other peoples ideas - cannot generate new ideas/alternatives easily.

 

11. Poor knowledge of word-meanings, particularly abstract concepts.

 

12. Tends to learn extreme concepts with few shades in between e.g. uses happy and sad, but not pleased, excited, disappointed.

 

13. Poor awareness of time-orientation and time-sequences though may have some rote-learning without true understanding. Relies on copying others to follow routine.

 

14. Poor semantic-links (affects classification, association, analogy, word-relationships and inference).

 

15. Word-finding difficulties - may appear dysfluent, use neologisms, circumlocute, make phonological errors or over-use vague vocabulary and pronouns e.g. thing, those.

 

16. Off-target responding - poor comprehension of question words; latches on to key-words rather than whole sentence-meaning. Difficult to maintain conversation.

 

17. Poor syntactic comprehension leading to syntactic errors at clause rather than phrase level. e.g. leaves sentences incomplete or incorrectly sequenced.

 

18. Uses word-endings but inconsistently e.g. changes verb tense during continuous narrative. Morphological errors increase as sentence becomes more complex.

 

19. Lack of saliency - can’t see main point of passage or use language concisely. Poor organisation of ideas (and often has general organisational difficulties).

 

20. Prefers to play with younger children or alone as can’t keep up with peers.

 

That is very useful and compact. I can tick enough of them for my own son. And if that is relevant to a child that is not 'delay' that is 'disorder' and an experienced SALT should be involved and you would be looking for a diagnosis of a disorder.

[wasuup]

That is very useful and compact. I can tick enough of them for my own son. And if that is relevant to a child that is not 'delay' that is 'disorder' and an experienced SALT should be involved and you would be looking for a diagnosis of a disorder.

 

 

I know I am going to look into private diagnosis's as well-may have to rob a bank though <'>

[Karen A]

I know I am going to look into private diagnosis's as well-may have to rob a bank though <'>

 

Hi.I do not know whether your child currently has a diagnosis of anything so am going on the basis that they don't.

I think that if your child could fit the criteria for a diagnosis of ASD it would be best to be seen by a team in your area who are qualified and have specialist experience in diagnosis.

Assessment for ASD may be undertaken by a team which includes a SALT and a paediatrician or psychiatrist.The service usually comes within CAMHS although not always.Some CAMHS psychiatrists also undertake ASD assessment.

If your child might have ASD it is worth pushing for an ASD diagnosis.Although other conditions such as SID or various speech disorders are recognised as disorders there may be little support available within your area.

.ASD requires input from various professionals and specialist educational intervention which can only be accessed via an ASD dx in most areas.

The details outlined in the list could be part of the picture in ASD and dyspraxia as well as those included in the list.So it really is worth pushing for a specialist assessment.

 

I know that some individuals do resort to private diagnosis in desperation.However I feel very strongly that it is not a good first option for many clear reasons.

It is likely to be expensive.

The LA may not accept the private dx and may disregard it as evidence in providing educational input.

A SALT is not qualified to assess for conditions such as dyspraxia,ADHD,tourettes and others which are known to be comorbid conditions.

The factor that most concerns me in your case is that a private diagnosis of a speech disorder may result in lack of access to provision for ASD which might be what is really needed.

I am an active member on the Forum and so it is obvious that I am a strong believer in parents obtaining information.However ASD really does require assessment from a team of professionals or a professional who is qualified and experienced in looking at the triad of impairment [ie the whole picture ].

I am very worried that you could fail to access the appropriate assessment on the basis of personal reading.

Asessment for ASD and conditions which have similarities to ASD should be available in every area of the country for under 18s provided as part of the NHS.

If your GP does not know who to refer to then I am sure the NAS will be able to provide information.Karen.

Edited April 15, 2009 by Karen A

[Karen A]

Can anyone tell me what is it when they have difficulties thinking of their own ideas on a topic (well being completely unable to) and answering questions? Would it be something to do with Dyspraxia, Auditory Processing or just immature Expressive Language skills?

 

 

Hi.Having read through the thread again I thought it worth saying.

It could be any of the above.

The list you have given could also be part of the picture in ASD and many other conditions.

That is why specialist assessment is so important.

It has taken us three years to reach the point where Ben now has a diagnosos of AS.

Ben also has a diagnosis of dyspraxia.

For various reasons it has taken some excellent professionals with experience three years to decide on a diagnosis and even now they do not all agree.

I do not pretened to be able to guess what an eventual diagnosis might be.However different conditions within the list require input from completely different professionals so it is really important to access a thorough assessment in the first place.Karen.

[wasuup]

Hi.I do not know whether your child currently has a diagnosis of anything so am going on the basis that they don't.

I think that if your child could fit the criteria for a diagnosis of ASD it would be best to be seen by a team in your area who are qualified and have specialist experience in diagnosis.

Assessment for ASD may be undertaken by a team which includes a SALT and a paediatrician or psychiatrist.The service usually comes within CAMHS although not always.Some CAMHS psychiatrists also undertake ASD assessment.

If your child might have ASD it is worth pushing for an ASD diagnosis.Although other conditions such as SID or various speech disorders are recognised as disorders there may be little support available within your area.

.ASD requires input from various professionals and specialist educational intervention which can only be accessed via an ASD dx in most areas.

The details outlined in the list could be part of the picture in ASD and dyspraxia as well as those included in the list.So it really is worth pushing for a specialist assessment.

 

I know that some individuals do resort to private diagnosis in desperation.However I feel very strongly that it is not a good first option for many clear reasons.

It is likely to be expensive.

The LA may not accept the private dx and may disregard it as evidence in providing educational input.

A SALT is not qualified to assess for conditions such as dyspraxia,ADHD,tourettes and others which are known to be comorbid conditions.

The factor that most concerns me in your case is that a private diagnosis of a speech disorder may result in lack of access to provision for ASD which might be what is really needed.

I am an active member on the Forum and so it is obvious that I am a strong believer in parents obtaining information.However ASD really does require assessment from a team of professionals or a professional who is qualified and experienced in looking at the triad of impairment [ie the whole picture ].

I am very worried that you could fail to access the appropriate assessment on the basis of personal reading.

Asessment for ASD and conditions which have similarities to ASD should be available in every area of the country for under 18s provided as part of the NHS.

If your GP does not know who to refer to then I am sure the NAS will be able to provide information.Karen.

 

 

Thanks Karen I understand what you are saying. He is being assessed and we have reports from OT, SALT and paediatrician and are waiting for the EP report. Then it is to go to a panal descision. I am just trying to ascertain what else if needed that I can do to ensure he gets the help he needs. With his speech if he is not going to get much support if they word it as a delay rather than as a disorder then I will consider private diagnosis as I know the LEA may not accept the report but it could be used if I needed evidence at a tribunal if required.

Edited April 15, 2009 by wasuup

[Karen A]

Thanks Karen I understand what you are saying. He is being assessed and we have reports from OT, SALT and paediatrician and are waiting for the EP report. Then it is to go to a panal descision. I am just trying to ascertain what else if needed that I can do to ensure he gets the help he needs. With his speech if he is not going to get much support if they word it as a delay rather than as a disorder then I will consider private diagnosis as I know the LEA may not accept the report but it could be used if I needed evidence at a tribunal if required.

 

Hi.Part of what I was attempting to say was that a diagnosis of ASD would be more useful than a speech disorder if your child fits the criteria.

.ASD is by a defenition a disorder of Social Communication so you would be unlikely to recieve a diagnosis of both speech disorder and ASD.

If you do not obtain an ASD diagnosis and you feel that you are not happy with the decision you could also request a second opinion.

What does the paediatrician think ? Karen.

[wasuup]

Hi.Part of what I was attempting to say was that a diagnosis of ASD would be more useful than a speech disorder if your child fits the criteria.

.ASD is by a defenition a disorder of Social Communication so you would be unlikely to recieve a diagnosis of both speech disorder and ASD.

If you do not obtain an ASD diagnosis and you feel that you are not happy with the decision you could also request a second opinion.

What does the paediatrician think ? Karen.

 

 

He thinks social communication disorder, obsessions and routines/rituals and blank/daydreaming (possible absence seizures), dyspraxia.

Edited April 15, 2009 by wasuup

[Karen A]

He thinks social communication disorder, obsessions and routines/rituals and blank/daydreaming (possible absence seizures), dyspraxia.

 

Hi.A very personal opinion.

I am not an expert.However I have a son who has a diagnosis of AS and dyspraxia.Ben has had various other diagnosis including dyspraxia,dyspraxia with Social Communication Difficulties [some AS but not enough for an AS dx] .A possible diagnosis of dyspraxia with attachment difficulties was also strongly suggested.[One combination that is not allowed when providing a diagnosis is AS and attachment disoder].

However with the list you have provided above I think it would be worth attempting to obtain support for a Social Communication disorder rather than a speech disorder.As I suggested even if you were able to obtain speech therapy via a private assessment the support you are likely to obtain is very unlikely to include provision for Social Communication Difficulties or obsessions.It would certainly not include support for dyspraxia which includes Occupational Therapy.

We were fortunate to obtain support from Autism Outreach with a diagnosis of dyspraxia with Social Communication Difficulties.Our area is unusual in this respect.

 

I think that Sally has suggested that it is possible to build a case for an Assessment of SEN on the basis of complex needs by demonstrating that a child has several different disorders or needs in different areas.Whilst this approach may work I personally would be concerned about weaknesses in this approach.It is possible for a LA to state that a child has needs in several areas but does not fit the criteria for support in any.

The Code Of Practice specifically states that is the case.

Even if you obtained the opinion of a SALT who was able to provide evidence to tribunal I would think that any evidence of a speech disorder would only enable a case to be made for support for a speech disorder.It would not automatically provide evidence to support input in school for Social Communication Difficulties or dyspraxia.

If your child needs support for a Social Communication Disorder then that is the support that is appropriate.

As I have said on another thread Ben was seen by a SALT for 18months for dysfluency between the age of three and four and a half.Despite seeing Ben every week the SALT did not spot that he had Social Communication Difficulties.So if you are considering private assessment it would certainly be worth ensuring that the SALT has expert knowldge and experience in ASD.

 

I hope I don't sound like I am giving you a lecture.If I do I am sorry.

I fortunately have no experience of tribunals.However I spent yesterday morning listening to the experiences of people who phoned five live.Those people talked about spending 10000-15000 in tribunal costs.Those who phoned in were very clear that they believed that it was impossible to win without multiple expert witnesses.They were clear that the LAs will go to great lengths to provide there own expert witnesses to dispute whatever evidence it provided.

I think there are others here who have succeeded at tribunal without paying vast amounts for private support.

However I think what I am attempting to say is please do try the NHS route first.If you find that the paediatrician is not supportive then think about private assessments.Karen.

Edited April 15, 2009 by Karen A

[Karen A]

7:53 Although needs and requirements can usefully be organised into areas, individual pupils

may well have needs which span two or more areas. For example, a pupil with general

learning difficulties may also have behavioural difficulties or a sensory impairment. Where

needs are complex in this sense it is important to carry out a detailed assessment of

individual pupils and their situations. However, the accumulation of low-level difficulties

may not in itself equate with a school being unable to meet the child’s needs through

school-based provision. In some cases pupils will have needs that are not only complex

but also severe.

 

Taken from the Code Of Practice 7:53.

Basically according to the Code Of Practice the accumulation of low-level difficulties may not in itself equate with a school being unable to meet the child's needs through school based provision as stated above.So having a longer list of disorders does not gaurantee access to a Statutary Assessment if the LA does not consider any of them to beyond the ability of a school to cope using delegated resources.

The important thing is to have an accurate picture of what the SEN are following a detailed assessment of the individual child.Karen.

[Karen A]

wasuup.I found this information which may be interesting.It appears that some people do regard semantic pragmatic disorder as being the same as ASD but under another name.

If that is the case then it would certainly be worth pushing for an AS dx which is more likely to be recognised as being an ASD.

http://www.mugsy.org/spd.htm

[Karen A]

wasuup Hi again.I have now found some information from NAS that may be even more useful.They are much more expert than me.

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1250&a=3361

Karen.

[Karen A]

Hi frogslegs.I am very sorry.Not only have I managed to go off topic I have now managed to completely hijack the thread with advice for wasuup.

I do apologise. <'> Karen.

[wasuup]

Thanks Karen for posting and replying to my queries. I hope we haven't wandered off topic too much froglegs-it's had a fair few views so at least it must have been interesting to read

[Sally44]

I wasn't suggesting a diagnosis of a speech disorder rather than a diagnosis of an ASD, I meant on top of.

It does appear from postings that different LEAs appear to make very different decisions and approaches.

In my LEA having a diagnosis of AS or ASD does not get you a statement. You have to prove complex needs and a diagnosis of ASD does not give any indepth information as to how severely a child is affected or how complex their difficulties are. It just says ASD.

Most children with a diagnosis of an ASD tend to have had some SALT input, and usually the difficulties are said to be 'delay'. But the speech and communications problems associated with ASDs are not delays - because a delay means you can catch up and it means you have a typical interpretation of language and typical language development (but slower), and have social skills etc. Those with ASDs have permanent difficulties with language and social interaction. If a child has problems with pronouns, literal interpretation of language, echolalia or delayed echolalia, difficulties with Semantics and Pragmatics, then in no way can that be called a 'delay'.

And, it sounds cynical, but I know that professionals are told not to use certain words in their reports. I know this because they have told me so off record. And a friend of mine only today had a conversation with her SALT (different LEA to mine), who was surprised to hear that support for Dyslexia had not been provided for the child she had written a report for. When my friend said 'but you didn't say Dyslexia in your report', the professional said 'we are not allowed to use that word but I made it very obvious that that is what the difficulty was, and that your child has severe difficulties that impact on all areas of learning'. Well, it's a shame she didn't say that then isn't it! And my own AAT phoning me on her mobile in a stationery cupboard 'because she had been told not to speak to me and she didn't want her work colleagues to overhear what she said to me because she was putting her job on the line'. Sounds bizzare, but it is true. So why can't they just tell the truth - it would save everyone alot of time and money (on private reports). It is all down to funding.

Yes Semantic Pragmatic Speech Disorder used to be considered as different to an ASD, now it is considered part of an ASD. But the point I was trying to make is that when you get a diagnosis of an ASD first, you then need clarification of how your child is affected. Some children will have Semantic Pragmatic Speech Disorder. If they are diagnosed with that within our LEA they cannot be discharged from SALT even when they are at secondary age. Without a diagnosis of a speech disorder the child will be discharged by SALT at secondary age, if not sooner within our LEA. And that doesn't even take into consideration 'social interaction' difficulties that have to be present to get a diagnosis of an ASD. So how can a child be discharged from SALT if they have a diagnosis of an ASD. Don't teenagers need input with social interaction/communication/relationships?

[Sally44]

Also regarding any private reports. That needs to be considered as a last resort, because you do need evidence of need and you do need evidence that the school/LEA has either tried and failed, or failed to try. Both of which take time to prove and gather evidence for. If agreement and provision can be reached without having to resort to anything private then great. No parent has free cash to be throwing around.

But be under no illusions. LEAs have legal departments who try to keep their costs down and within budget. My LEA now only talks about 'learning difficulties' and not dyslexia. Because once a child has a diagnosis of Dyslexia there are tried and tested ways of meeting that need, which can involve a teacher specialised in teaching children with dyslexia. As a significant amount of parents have been successful at getting that provision for their children at tribunal, the only way the LEA can get around having to meet that specific learning difficulty is to not use the word 'dyslexia' in any of their reports and hope that any parents will not get a private report that does use the word Dyslexia.

I believe on the IPSEA website there has been some legal movement on this issue, as an adult (not with an ASD) has tried to sue the LEA for not meeting her needs. This is a woman who was diagnosed with dyslexia and feels that she did not meet her educational potential because her learning difficulty was not addressed in school and she has argued that that constitutes discrimination.

Infact in our LEA (after much lobbying by parents of children with ASD)(and after bringing up disability discrimination law), they now provide an OT who goes into the enhanced resource and special schools. However at the same time the Dyslexia outreach teachers position has disappeared. And I know that there is only so much money in the pot. But all LEAs are paying private school fees for some children. In our area, for just one private school (and there are other private schools they also pay fees for), the LEA are paying a yearly fee of £210,000 pa in private fees for 5 children. With that amount of money they could have set up a local school that had an SALT, EP and OT on site and met the needs of many children instead of paying private fees for just 5 children. We don't make the system, others do. In some circumstances that then leaves solicitors on both sides fighting over who has a right to what services. And those that do win a right to those services end up taking money out of the pot leaving less remaining for the rest of us. What is the answer to that. Our LEA is now making moves to change the criteria under which a Statement will be issued. Our local PP is encouraging all parents of children with ASDs to start SA's now because the change in criteria will mean that no Statement will be issued to any child that is capable of remaining in a mainstream school. PP are suggesting that this means that resources are going to be concentrated in enhanced resource of special schools because those children have a higher chance of winning at tribunal and therefore it is more cost effective to support those children - otherwise some of them will get placements in private schools. With this change mainstream children will suffer because they won't get statements and therefore the LEA will not be legally bound to meet their needs. That is my LEA. Everyone elses may be completely different.

[Sally44]

The case on IPSEA can be found at www.ipsea.org.uk/phelps.htm

And it is regarding professional negligence, not discrimination as posted earlier. This could be an interesting turn of events if professionals can be found to be negligent if they don't diagnosis or provide proper supports!

[Sally44]

I found this link on the NAS website about the whole SEN process. http://www.nas.org.uk/content/1/c4/34/44/n...oing-battle.pdf

 

Another thing to consider instead of an outright private diagnosis, is whether you might achieve some or all of your goals by using a private professional on a regular therapy basis. For example there are many private SALTs working in clinics and running individual and group therapy sessions for children. But I would again recommend that any private professional should be independent (ie. not working 9-5 for the LEA or NHS), and for them to have experience of tribunal work. But for them to see your child and recommend a weekly or fortnightly programme is still 'evidence', and some parents use that in conjunction with LEA SALT as well. That would mean the cost would be spread out.

For example a couple of years ago I paid for my son to go to fortnightly Play Therapy sessions. This was run by a group of Play Therapists who had a particular interest in this type of therapy for children on the autistic spectrum. My son went for about 18 months and I believe that these sessions were responsible for making him interested in social interaction for play purposes because during these sessions he led the play, so he was motivated, and they modelled behaviour back to him allowing him to see a reflection of himself. At that time he had no interest in other people as most social interaction was not successful from his point of view. And although they didn't write a report, they did ask all parents to complete a questionaire about social skills, and they also wrote a two page report on my sons play abilities both in using language and social interaction skills. This was some of my main evidence that my son needed support during playtimes/breaktimes and needing to be taught some social interaction skills. This was re-affirmed by the private SALT who did alot of assessments which enabled her to give very specific examples of his difficulties and how that impact in the school environment.

I also used clubs that my son had joined as examples eg. football club - complete disaster - couldn't follow verbal instructions, didn't want any kind of physical contact, no concept of teams or team work or strategy or even what the aim of football was! Also trampoline club - he found it hard to wait his turn, couldn't remember verbal instructions, couldn't sequence physical movements, literal interpretation of language etc. Those difficulties all apply in the classroom setting.

So there are lots of ways of gathering evidence. But you do need to take a long view, methodical approach and not go in with guns blazing. But just start finding out how your LEA works, what their policies are. Whether they are legal or not! Go to NAS or Parent Partnership seminars about ASDs or the SEN process etc.

[Karen A]

I wasn't suggesting a diagnosis of a speech disorder rather than a diagnosis of an ASD, I meant on top of.

It does appear from postings that different LEAs appear to make very different decisions and approaches.

In my LEA having a diagnosis of AS or ASD does not get you a statement. You have to prove complex needs and a diagnosis of ASD does not give any indepth information as to how severely a child is affected or how complex their difficulties are. It just says ASD.

Most children with a diagnosis of an ASD tend to have had some SALT input, and usually the difficulties are said to be 'delay'. But the speech and communications problems associated with ASDs are not delays - because a delay means you can catch up and it means you have a typical interpretation of language and typical language development (but slower), and have social skills etc. Those with ASDs have permanent difficulties with language and social interaction. If a child has problems with pronouns, literal interpretation of language, echolalia or delayed echolalia, difficulties with Semantics and Pragmatics, then in no way can that be called a 'delay'.

And, it sounds cynical, but I know that professionals are told not to use certain words in their reports. I know this because they have told me so off record. And a friend of mine only today had a conversation with her SALT (different LEA to mine), who was surprised to hear that support for Dyslexia had not been provided for the child she had written a report for. When my friend said 'but you didn't say Dyslexia in your report', the professional said 'we are not allowed to use that word but I made it very obvious that that is what the difficulty was, and that your child has severe difficulties that impact on all areas of learning'. Well, it's a shame she didn't say that then isn't it! And my own AAT phoning me on her mobile in a stationery cupboard 'because she had been told not to speak to me and she didn't want her work colleagues to overhear what she said to me because she was putting her job on the line'. Sounds bizzare, but it is true. So why can't they just tell the truth - it would save everyone alot of time and money (on private reports). It is all down to funding.

Yes Semantic Pragmatic Speech Disorder used to be considered as different to an ASD, now it is considered part of an ASD. But the point I was trying to make is that when you get a diagnosis of an ASD first, you then need clarification of how your child is affected. Some children will have Semantic Pragmatic Speech Disorder. If they are diagnosed with that within our LEA they cannot be discharged from SALT even when they are at secondary age. Without a diagnosis of a speech disorder the child will be discharged by SALT at secondary age, if not sooner within our LEA. And that doesn't even take into consideration 'social interaction' difficulties that have to be present to get a diagnosis of an ASD. So how can a child be discharged from SALT if they have a diagnosis of an ASD. Don't teenagers need input with social interaction/communication/relationships?

 

Sally.I do not want to repeat what I have previously posted and have already apologised to frogslegs for hijacking the thread so I will attempt to be brief.

Firstly the NAS regard semantic pragmatic disorder as being another lable for ASD which they regard as unhelpful.They believe it is more appropriate to use the diagnosis ASD.

Secondly having a diagnosis of a speech disorder other than ASD may well not enable access to specialist provision which is extremely important for children with ASD.Most LAs only provide specialist input for children with an ASD dx.

Thirdly I am very concerned at the idea of parents attempting to build a case for a Statutary Assessment on the basis of breaking down a child's needs into several different diagnostic categories or areas.Which is what you are suggesting as far as I can gather.The COP specifically says that neeeds should be both severe and complex.

I believe that parents should be clear about what they believe their child's needs are.However in many cases there is some overlap between conditions.For example many children will have motor and co-ordination problems which are recognised as being part of ASD that would not warrent a further diagnosis of dyspraxia.Specialist OT should be provided for motor and co-ordination difficulties for these children rather than parents needing to obtain a dyspraxia dx.

 

 

As I said there is a very real risk that the LA could decide that a child has several needs in several areas none of which are of sufficient level to warrent a Statutary Assessment.

Fourthly ASD is by deffinition a disorder of Social Communication.So in attempting to obtain a diagnosis of Segmatic Pragmatic Speech Disorder and ASD one would simply be attempting to obtain another diagnosis of the same condition under another name.

 

I return to my main concern for Wassuup.I could never feel comfortable with the idea that a diagnosis of Segmatic Pragmatic Disorder could be sought if that could actually prevent access to specialist provision for ASD.Karen.

Edited April 17, 2009 by Karen A

[Sally44]

In an ideal world, and maybe within your LEA what you have posted is true. But you have to respect that mine and many other parents do not have this experience. Mine was similar to the report posted in the NAS link mentioned above.

A diagnosis of an ASD means that the child has to have significant clinical difficulties with both language and social communication to get the diagnosis in the first place. So there should not be any need for any further diagnosis on top. But when professionals are not allowed to assess and name needs and make recommendations, and call 'disorders' 'delays' and discharge children from SALT, and Statutory Assessments are turned down on a diagnosis of an ASD (including autism and aspergers as well), then what are parents supposed to do? They have to prove the level of difficulty in each area. I was supported throughout the process by the NAS educational advisers and the Tribunal Service and IPSEA. If my sons difficulties had been acknowledged his statement would have been okay and his placement would have been agreed. But I was denied access to everything my son needed, including SALT and school placement. I was denied transport. I was denied a TA to support him in class. This was even when the LEAs own professionals broke ranks and said my son needed a dedicated autism unit. The LEA still denied he needed that. Unfortunately things do not happen as they should. And LEAs bank on blanket refusals of Statutory Assessments and Statements in the hope that parents won't have the money or stammina to keep pushing towards Tribunal. Have you read the NAS link I posted? I am really glad your experience was not mine. But mine happened and is not an isolated case.

And as Frogslegs has first posted. She has received a diagnosis and then been left to get on with it. How is that possible if a diagnosis in itself demonstrates complex needs?

[wasuup]

His diagnosis atm is: possible social communication disorder, dyspraxia, obsessions and routines, blank spells.

His SaLT report has many pointers in it towards semantic pragmatic disorder but cites his speech and language expressive skills and social interaction skills as being delayed and immature. I will wait until I have a firm diagnosis and if his needs are not met as a result of this then I know how to try to get them met because of all the advice that everyone has given me on this thread. <'>

[frogslegs]

Don't worry about going off-topic...I am reading all your discussions with great interest!