Confused by link between ASD and sensory problems

[merrymouse]

Hello, this is the first time I have posted although I have been lurking for a while.

My 6 year old son is currently being assessed for Asperger's. Having read a lot of information (too much?) I would agree that he is on the spectrum (albeit in many ways normal for my family!). He also has a whole shopping list of problems diagnosed by an NHS OT - low muscle tone, poor tracking, retained infant reflexes, sensory seeking, poor fine motor skills etc. etc. etc.

Given that an ASD is diagnosed by observing symptoms, I don't disagree that DS displays AS symptoms - he certainly has poor social skills compared to other children his age. However, as far as I understand you develop social skills by interpreting feed back that you get from other people. If that information is scrambled how do you interpret language and facial expressions? How do you learn not to knock somebody over in the playground if you have a limited sense of where you are in space? As DS says, when he is in some situations his brain 'overheats'.

On the other hand, I am currently attending an NAS Early Bird course, where I have been told that autistic people are distracted by sound and light because they aren't focusing on faces, i.e. they don't so much suffer from sensory processing problems as lack of interest in others. To be fair I am paraphrasing what I was told, and I don't know if this was the opinion of the speaker or somebody else.

However, the thrust of the course seems to be that autistic people have no imagination and are panicked by things they can't understand. I would say that my son is panicked partly because he wants to understand everything, and partly because he is trying to pre-empt a situation that he can't cope with.

DS's difficulties are clearly interfering with his everyday life, so he is far enough along the spectrum for me to agree that he is 'on it' (although aren't we all on some spectrum?). However, I feel that he has been put in the autism 'box' where every autistic person fails the Sally Anne test and can't cope with a banana being used as a telephone; while his problems like low muscle tone seem to have been completely forgotten. A Social Story about how to behave in the playground won't help him to play football if he can't kick a ball. Aaaahrgh!!!!!!

From what i can make of it all 'Autism' is just an umbrella term for many different disorders, syndromes and its very individual.

My ds for example has a very good imagination, he just finds it hard to accept that not everyone else views it in the same way.

We might all show some traits, but i think you have hit the nail on the head, its how much it interferes with our daily lifes, that puts you on the spectrum or not as the case may be.

I have also found that once Autism is mentioned you are fobbed off and individual difficulties are not addressed, as professionals like to pass the buck ie sensory problems are then put down to autism.

I know exactly how you feel-my DS (5) sounds identical to yours!! He has hypermobility, verbal dyspraxia and social and communication problems. he has retained primitive reflexes (inhibition of these is the best therapy he has done so far), sensory issues and is uncoordinated. He displays great imagination and plays reciprocally and appropraitely with his sister. The paed has put him on the autistic spectrum purely because a diagnosis of "social and communication issues" will gain him zero support at school. My DS behaves well at home with fewer issues but finds school reception class a sensory nightmare-I absoultely agree with you about the scrambled messaging-eg DS will often laugh when he is told off because he is unsure how to interpret a cross face but when asked whether his behaviour will make a teacher cross he knows perfectly well it will. I have found Lingles posts on here reacyy informative because she has real insight into the impact sensory isuues have. Our main problem was an ed psche who said "comic book social stories" and then buggered off.
We are however lucky enough to have a fab SALT who wd agree with what you are saying absoultely and believes the autistic type behaviours school are highlighting are principally sensory based.
Wd be great to know how your DS is coping at school??Because I am having a nightmare with my poor boy who just cannot copw with the loud, busy bright bustle of a reception class..
Not much help-sorry-but actually lovely to hear from someone going through the same as us

Would also add that ds also a shopping list of different symptoms and you literally have to raise these with Paed and ask for referrals.

Hmm. DS has atleast 2 reports that claim that he is receiving Occupational therapy, when in fact all that happened is he once saw an OT who gave the school some advice.

Positively, the Senco, his class teacher and 1:1 TA are really good and seem to know how to work to his strengths. He does half days which is time consuming for me, but does mean we get to spend the afternoon having picnics, climbing trees, swimming and riding bikes which is great at this time of year.

I realise that funds are limited. DS is lucky to get 15 hours a week of TA help at school. Its just that I haven't found a single professional (as opposed to the people who DS sees on a day to day basis at school) who has been helpful beyond ticking the odd box. If all they are going to do is provide a diagnosis and say occasionally "I must give you some information about social stories", couldn't they say that at the outset?

Merry, has OT assessed your ds's needs ie 1:1 assessments, not just observations in school?

What other input has your ds had from other professionals?

Hi Merrymouse,

You were told, basically, that autistic people are distracted by sound and light because we aren't focusing on faces, i.e. we don't so much suffer from sensory processing problems as lack of interest in others?

Generalising throughout, from what I read:

More or less, yes. The brain research suggests that the bit of the brain that deals with people (who are you, what does your eye contact mean, what do your face expressions mean, what can I learn from your body language and body position, what can I find out from your tone of voice?) is used as a data filing cabinet instead.

And that's the bit that is linked up to all the caring emotions and the quick reflexes that are linked to "oh no, someone's hurting my sister - I must rescue them fast!". It's why autistic people can panic if someone moves or breaks our things, because to our brain it 'feels' like someone's attacking a member of our family or hiding them from us.

But research amongst autistic people suggests most of us do care a lot about people and are very interested in them - just not in ways you can easily spot. Because we can't understand all the social signalling, looking at a face is meaningless. Might as well look at the clock on the wall. We have to rely on words to tell us how someone's feeling.

Claw3, The observations by the OT have been in school, and then we received a written report. I think she saw him 1:1, but not while I was there. SALT assessments have also been in school. I think that is also why I am feeling a little bit frustrated - all help seems to be delivered through school, without a great deal of feedback to me.

DS has seen a paediatrician, but he just did tests and didn't explain his diagnosis. DS still has to see a psychologist, so maybe we will get more feedback then.

Amber that is very interesting. DS is generally good at reading familiar faces, or faces in a static setting - e.g. if an illustration in a book is slightly off he will pick up on that. On the other hand, he has problems with face recognition, and letter reversals - he still finds it difficult to copy a letter - it is as though every time he does it he has to think it through. He also has problems tracking and focusing on an object. His eyesight is perfect, but almost in the same way that he can't control a pencil, his eyes can't keep up with what his brain wants them to do.

I think what I find confusing is that that there is clearly a dyspraxia/autism overlap, but there are also people with autism who do not have sensory and co-ordination problems. I can see that none of these people's brains are functioning in an NT way (whatever that is), and this can produce the symptoms of autism, but does it then follow that every person on the spectrum has a brain that functions in the same way?

All deaf people are hard of hearing, but this can be caused by different underlying problems.

Welcome Merrymouse,

"Autism" is not one thing (credits Mrs Turnip), but saying that would presumably lessen the NAS's influence.

Reading about that early bird course, I'm so glad that I declined to go through the diagnostic process for my son. Otherwise, we would doubtless have been on a similar course, and my husband and I probably would have ended up being disruptive attendees!

For my son, it is clear that his problems arise precisely as you say, because the signals are scrambled.

I respect Amberlight's point of view, and will accept that it applies to her and to people she knows and has studied, but don't accept that it applies to my son.

You might find some of the conversations on this board about theory of mind interesting.

One of the things I found really difficult about the Theory of Mind part of the Early Bird course was the idea that all NT people instinctively know what another person is thinking. I feel that an NT person might be able to have a good bash at guessing what another person is thinking, based on observation and experience, but they don't know what another person is thinking. The example given on the course was that an NT person knows why a baby is crying.

accidental name change there!

Madame, you say with not a lot of feedback to you, they should have got feedback from you.

I would be very dubious of any report written without taking account of my concerns. How can OT advise school,if she doesnt know what his needs actually are.

Ds's OT did a home visit, filled out a sensory profile and asked lots of questions, did a couple of tests, then went into school.

Ds's SALT assessments were done in school, followed by a meeting with me to discussed her findings and my concerns.

Its bad practise not to involve you, make sure you are involved in future, request meetings, ask to speak to whoever is going into school. You are the expert on your ds.

Madam or Merry Sensory Integration disorder and Autism are 2 separate disorders and although it is very common for children with autism to also have sensory disorders. Children with sensory integration disorder rarely have autism.

I think that is what you were asking

"The example given on the course was that an NT person knows why a baby is crying. "

that's almost funny......

'The example given on the course was that an NT person knows why a baby is crying.'

If they did, there wouldn't be so many posts on MN asking what to do because they've done everything they can think of and the baby is still yelling.

ROFL.

I think we ought to send a posse on to this course......

I have read 'The Out of Sync Child', but thought that Sensory Integration Disorder wasn't very well recognised yet as a diagnosis.

To a large extent, for me, going on an Early Bird course is part of 'playing the game' and seeing how the system works. It has been interesting to spend time with other parents, and get a better understanding of what TA's do in the classroom, even though it's quite a time consuming way to get some rather information.

Getting a diagnosis has been presented to me as a way of getting help and funding. If you don't get a diagnosis are you also opting out of getting a statement?

I agree with claw re: ASD as umbrella term.

There's still a lot to be proven in AS/ASD research.

My interpretation of the sounds/lights obsession FWIW is that the sensory processing of faces is particularly limited (mirror neurons misfiring/overfiring in the brain) and sounds/lights are more stable and soothing than the complex and confusing messages that are delivered via facial expressions (even before you start thinking about the asynchrony you can have between, say, tone of voice and facial expression and words).

I will never forget reading an online thread between AS adults where one spoke about how frustrating it was that NT's communicated by a 'wrinkle' of the face e.g. and then she wrinkled and I had no idea what was going on. Sound and light tend to be more stable and predictable and patterned.. does this make sense?

Merrymouse, you are quite right Sensory Integration Disorder is not well recognised and is not even a diagnosis in this Country (it is in the US) hence lots of children go 'undiagnosed'.

My interpretation of the sounds/lights etc is all to do with modulation, the brain is unable to organise the speed or quality of the information received hence information that is received too fast is displayed at being over-responsive, information that is received too slow is displayed as under-responsive (seeking).

Also the no eye contact, lots of children with processing difficulties, can only use one channel at a time.

Statements and help are supposedly given on a needs basis. In reality a diagnosis helps. They seem to wriggle back and forth between on a needs basis, but then wanting to know what is responsible for these needs. If you dont have a dx, they try to put the behaviours down to something else.

"Getting a diagnosis has been presented to me as a way of getting help and funding. If you don't get a diagnosis are you also opting out of getting a statement? "

I would have thought so Merry.....

Good that you'll be going in (assuming you do go in) with your eyes wide open to the downside - ie the generalisations that can be made.

Lingle, I think it's important to understand that I'm relating research from experts, so it's not my point of view. It's their observations from that research and fMRI testing etc. It's why I say "generalising throughout" on the post.

I understand completely what you mean about the theory of mind argument on the Early Bird Plus course and I was that disruptive attendee myself over this because it is a hypothesis and should not be given the weight of scientific fact.

Even last week, I ended up arguing with the Autism Outreach team at school as the woman prattled on about my son not being able to understand that other people have emotions etc etc. Again, I had to remind her that this was a THEORY. The NAS appear to run with it as fact and I find it both a poor reflection of reality and a worrying argument to follow as it implies that these children are somehow, biologically, less than human - e.g. like psychopaths that don't understand that people have emotions or care what they think. Therefore, you get so called experts saying they have no sense of humour and no empathy etc. Pure bollocks!

I actually the lines between disorders are fairly indistinct in lots of children. What is the difference in reality between a child who has SID/SPD or say dyspraxia and problems with social communication/social skills as a result and a child with autism at the high functioning end? In practice, very little and it is entirely a question of diagnostic interpretation.

To say otherwise, is to suggest that there is a failsafe way of distinguishing between children with one disorder and the other. There is not. Some children with sensory problems have none of the social skills/communication issues that go with autism so, fine, there is no problem there.

However, I would suggest that they are likely to be in the minority and that many children with profound sensory problems exhibit some or all of the key features of ASD.How do you distinguish? There is no blood test? No gene test? It is clinical judgment.

I believe that the sensory aspect of ASD probably is probably crucial to a real understanding of the neurological deficits that go with autism and that we are kidding ourselves big time if we think experts have any real answers at the moment. They don't.

yes amber, you did say you were generalising, sorry not to acknowledge that.

Others don't make that acknowledgment though, and that has a big impact on children.

oh, and don't get me started on "experts".

"when they say it, it's evidence; when I say it, it's anecdote".

www3.interscience.wiley.com/journal/118902560/home?

Link to the Ethos scientific journal that has just published a number of research papers into autism and socialisation, society's views of us, changing perceptions and research about us, etc.

I can understand that people have emotions, but I think it's often like being in one of those films where they put the speed up so that everyone's speech and movements happen at lightning-fast speed. It's just a blur of expressions and words and incoming data that happens SO fast and SO much at the same time. I can't focus on any of it because my brain is going so slowly.

But if someone says they're happy or sad or whatever, then I know. And I do know how that feels, because I've learned to remember how I feel when I'm happy and sad etc. And I've learned what you're supposed to say and do if someone says those things (er, not terribly well, but it's passable) .

Younger children (almost always the subjects for these things) may just be rubbish at explaining it or showing it. Definitely not the same thing as having no emotions or understanding none of them.

Merrymouse - I could have written your OP. The last line particularly resonants with me.

We are a lot further down the line. My DS1 has a dx of AS even though when he was assessed the clinical psych said he was not bad enough to be given that label. Sadly she wasn't at the review meeting that dished out the label and nor was the OT who had a whole list of motor and sensory issues. IMO he should have got a diagnosis of DCD with social comms difficulties.

Now he is older (nearly 10 and in Yr 5) the OT who saw him for a review last month has suddenly put DCD on his report as well as ASD.

I don't deny either that he has problems. I started the dx process thinking he would get a label of AS. But 4 yrs later, it doesn't fit. I read books about AS and they aren't describing my DS. I read books on DCD/dyspraxia (which is very much about sensory and motor issues) and they do. And then lovely people like Amber share their experiences and talk about what AS is really like and how she has trouble undertstanding facial expression but that isn't DS - he can read me like a book without me saying a word (when he looks at me)! The AS label just seems inappropriate for him.

End result of all of this is that DS's teacher agreed this week that he needs to be reassessed so that we can focus on getting the right school and help for him when he moves to secondary.

But on the whole I am with you. I understand the venn diagram style overlap in symptoms but I don't think he fits wholly in the AS circle. However, if you take away the motor/sensory/coordination difficulties are we left with a boy who has AS and I don't think so.

I think he got the AS label because it is almost fashionable, because they perceive that people have heard of it and not DCD/dyspraxia/sensory integration problem and because they could wash their hands of us and shove us out the door saying there was nothing they could do for him. But then I am a cynic over this now.

Thankfully the school and the OT have treated the symptoms and not the label so we have had help for which I am grateful but if that label is not right, moving up the school system, it is going to cause problems.

Sorry ended up with my usual (long )rant when stirred up on this subject but I do think that too often AS/ASD labels are handed out inappropriately.