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!!!!!!

Amber, its very interesting how you describe 'It's just a blur of expressions and words and incoming data that happens SO fast and SO much at the same time'

Ds has started to describe to me what he calls 'flashbacks' he describes it as everything going white for a while, then when its gone he finds himself being somewhere else. Almost like some kind of memory loss.

I think that there is still a lot of work combatting fear/hatred of difference and that the NAS and people like Amber are engaged in that important work and Amber certainly makes a huge difference to people's lives and understanding.

But I wish the NAS would treat itself primarily as helping people whose senses and/or processing is imbalanced (that's what we're talking about with autism isn't it? whether it's auditory processing, face blindness, motor planning,etc?).

I think the political term "autistic" has too much historical baggage and rather than fighting to make the public see "autism" as something that's not monolithic, they should have a debate about whether the term has reached its sell-by date, and whether they should just focus on unbalanced senses/unbalanced processing. And then all that MRI evidence would slot nicely into place. Face blindness? test for it.

It would be so much more informative for the public, for teachers, for children. And there would be fewer arguments between spouses when problems become apparent. The wife could hear the husband say "he just takes after me" and say "yes, like you, he finds it hard to understand what people say and can't recognise faces, and he has other imbalances too that you don't have so he is going to need extra help". So much less heat than "no, you're in denial, the doctor says it's autism, you have to accept it" etc,etc, etc,.

Couldn't agree more lingle. The sensory processing aspect is the key and the huge lumbering triad imposed on top of it is meaningless in terms of meeting needs.

It is really important this area because it affects so much of what is 'taught' to children with ASD and the way it is taught.

You could sit with DS for bloody years teaching him about facial expressions and emotions with comic strips and social stories etc but you would be wasting your time because his social communication/sensory problems can prevent these skills (which he already posesses) being put into practice. So the emphasis is all wrong.

It also confuses teachers and parents. Another mum in class has just started on the Early Bird Plus course and was really upset about the 'lifelong disability' aspect and all the talk about the child not being able to recognise emotion, feelings of others etc. It just wasn't how she saw her own child but she instantly started almost 'disablising' him as a result, i.e. rather than concentrating on his obvious needs, she started undermining the skills he had already acquired by feeling they weren't somehow genuine because as an autistic child he can't really have a sense of humour or understand how she feels etc.

Very confused messages. I think we need to veer away from the idea of neat little boundaries between these disorders - dyspraxia, ASD, SID etc. The venn diagram approach of interlapping features works best but does make a mockery of the labels.

"she instantly started almost 'disablising' him as a result"

Greenspan understood this.

think of the father seeing this happen to the mother and when he says something being told he is - oh yes, here it comes - "in denial".

Would also like to add in my experience receiving a dx of autism seems to indicate the end of the road to many professionals. Here you go all his difficulties are down to autism, accept it, take your piece of paper and be on your way, you are discharged.

When really its only the beginning of unraveling all the different disorders/syndromes that make it autism.

The label of autism is only useful, to give a general impression of the disabilities, its not the conclusion.

Yup, the recent New Scientist article about autism research showed that the researchers have often been discounting and throwing out any positive findings in order to concentrate on all the negative stuff. So, autism became about negativity, about things we 'can't' do. And of course some people really do have a huge list of 'can'ts' and need much help and support etc.

If only we'd spend as much time listening to parents and communicating with and watching the children themselves to find out what is possible in their lives, what they can do. And finding ways to enable them to do it.

It's like that word "obsessive". Autistic people are 'obsessive', but other people if they had that degree of concentration on a topic are 'determined' and 'focused'.

An autistic person who focuses on a toy engine for three hours is 'sad and friendless'.

A non-autistic person who kicks a football against a wall for three solid hours is 'sports mad'. That's not a problem.

Too often we define our differences negatively.

Claw that should not be the case. A label of autism, as you say,a shorthand way of describing a range of symptoms and if there are functional deficits which mean that a label of autism is worth pursuing, then services should be provided to address thsoe specific deficits.

However, the reality is there is often no specialised provision available. For example, as you know, access to sensory trained OTs is frequently limited which means local services are not equipped to provide the assistance required.

I think it is a case of breaking down the areas which require support/assistance and trying to address those issues directly. The problem is there are very few specialists around whether that be with SALT or OT or CAMHS. It's a case of grabbing help where you can and doing it yourself.

Debs, totally agree. When i had my interview with ASD assessment service to give history etc and she gave verbal dx of Autism and told me she would arrange formal meeting to give official dx, i asked what then.

She told me they would discharge once dx is given, Paed is also part of this team.

So assuming, i have no other involvement from anyone else or am not aware of any of the other difficulties which accompany ASD, im on my own. Im sure there are plenty of parents who are in that situation.

Have also noticed other services, like OT then thinking dx of ASD, not our problem and trying to pass the buck to non existent autism support. To quote a OT report 'ds is likely to receive a dx of autism and we suggest it might be helpful to seek advice from CAMHS'

Yup. Same for diagnosis of adults. 'You have a form of autism, probably going to call it Asperger syndrome because of the high IQ but linguistically it fits the pattern of HFA'. End of conversation.

No funded services, support, nothing. Maybe a social group linked to a charity if you're lucky, and if you can access one (which I can't, since I panic in social groups and can't attend one anyway!!). Asked recently for help to get me through a crisis - was told I can't even be assessed for 28 days and it's extremely unlikely that there's anything anywhere to help me. Oh, I could pay for an untrained carer to come round and listen to me, apparently.

So, we generally have to pay, or get nothing. Really really hoping and praying it changes in a big way with the Autism Act and the Equality Act coming into proper force later this year/early next year.

I have to say that before my DS was dx I was resistent to giving him a label because it does lead to him being treated differently but then it does provide a short hand to explain what is wrong. If I say he has AS at least people have a vague idea. Without the label he might just come across as an anti-social lazy whinger which he isn't.

On the other hand, I tend to think there are lots of children (and adults) who have a range of symptoms that don't put them properly within any definite diagnosis and I do wonder whether we should even be labelling them at all and, as others have said, should instead be trying to deal with their difficulties without having to call them anything. That doesn't seem to be how it works though.

Amber - your point about obsession/enthusiasm and being sports mad if and NT is kicking a ball about for hours and but obsessive if you are ASD struck a cord.

I think the same goes for eye contact. There was some research out about a year or so ago which showed that those children who weren't looking at a speaker (might have specifically been a teacher in the classroom but I can't remember) were actually paying more attention than those who were gazing at them. So an NT not looking at somebody speaking to them is listening carefully but an ASD child is having trouble making eye contact and in a world of their own. That might sometimes be the case but I would argue that it isn't always if my DS is anything to go by. He could be behaving like an NT child but the assumption is that he isn't.

"I think he got the AS label because it is almost fashionable"

What happened to good old ADHD?

Debs, i have a friend (well not really a friend, the lady who used to live in this house and i got talking to her) her son has a dx of ASD and ADHD and she has no idea about either of these disorders, she has not made it her business to find out.

He receives some help in school because he is behind. On meeting her ds, it is very obvious that he has lots of sensory difficulties and behavioural difficulties.

Her ds was dxed, then discharged. None of his other difficulties have been identified or supported and probably never will be.

You almost have to become an expert yourself and push for these things, otherwise they are not addressed. Thats worrying.

have not read all of the messages. friends son has AS and they found (privately) sensory trained OT who gave them exercises to hlep integrate the reflexes. took about 3 months to see changes, but then starated to see a gradual difference, happier, calmer etc.

they are also doing gluten free casein free ddiet along with various nutritional suplements which are also helping. treatingautism.co.uk - but this might not be relevant to you if you think not AS

I think you are absolutely right Claw. I also think the worrying thing is the confusion over labels and the negative connotations they bring as highlighted by Amber's examples.

You start off noticing problems and wanting to help your child with specific issues. Then, suddenly, you get dragged into an 'autism' world you can't get out of with stereotypical assumptions, poor knowledge, little support, and bad practise.

You then end up looking like you're the person with the negative assumptions about your child e.g. you get teachers saying in accusing tones 'I went on the ASD course but that's not him, DS does have a good sense of humour'. Yes, I know, I never said he didn't, it's that autism crowd who will tell you 'these children don't have a sense of humour etc etc'

Don't get me wrong DS has very clear problems which need addressing and I do believe a dx may help him educationally but I do worry about the stereotyping that goes with dx and a label and I do think, sometimes, in the need to get across the message about ASD, this is compounded in the NAS training materials.

debs40, exactly right. If you mention anything good, it's an opportunity for funders and service providers to say "well in that case nothing for you". So children or adults have had to be a total tragedy in order to access anything, and be portrayed that way. I think it's why parents of very profoundly affected children can get very anxious if anyone with autism says anything positive about their lives - they are so worried that positivity will mean that their own child's difficulties will be dismissed.

It's a mess.

Went to a Council recently to give some of their staff a training session on autism access. Because I look 'normal' (er, whatever that is ), one of the leaders didn't realise I'm on the autism spectrum and started doing an impression of a dribbling learning-disabled person, saying that was someone who was 'autistic'. Luckily my colleague was there to put her straight on that point. But that is the stereotype, and if we don't fit it, we get nowt. Well, it difficult enough to get anything even if you do fit it...

Yes Amber you are so right! We know all our children's good and 'bad' points and it is horrible having to be stuck stressing the 'bad' to get anywhere because the good is used as an excuse to withdraw support for the needs!

Thanks for the positive feed back on sensory integration therapy. One of the frustrating things about starting this process is that I can now see that I have been waiting for the state to say what they won't provide before seeking out help myself - we have delayed seeing a private OT because we thought/were given the impression that we would receive more help through the school. (Does that sound incredibly naive?)

Going back to the NAS course, I think one of my difficulties is that there is so much generalisation of NT people (or 'we' as the Early Bird people like to say!) having excellent people skills, always knowing what others are thinking because of some almost ESP like ability. On the other hand, if I give an example of DS showing empathy, it's because he has 'identified your expression and connected it to a past event'. Assuming that I am a 'we' person and not a 'they' person (Early Bird speak for autistic), I think that NT people do exactly the same thing when 'we' feel empathy - relate the information received to a past experience. Also, I think that shelves of books on self help and relationships, cultural misunderstandings and wars show NT's can be pretty rubbish at empathy too.

Even if I am wrong and his brain is working in a different way to mine, it is still empathy!

Merrymouse, I do hope you are able to raise these concerns.

Amber, I support all the points you raise about difference being treated as negative. However, my experience is that the NAS-type crowd - and my speech therapist - wanted to insist on finding extra differences that DS2 simply does not have so he would fit their daft criteria.

So my problem is not that his differences are demonised. My problem is that his normal characteristics and personality would be pathologised.

ooo, I've not tried to understand the word 'pathologised' before. I'm off to look it up! I love learning new words.
You're undoubtedly right, lingle.

Merrymouse, arrghh re the "we" and "they" language in that context. It's as if there's only one correct way to empathise and our way isn't correct and doesn't count. Well, if it's all empathy, what's the bloomin' practical difference?

It's like saying that an artist who has no hands and has to paint with their feet isn't really an artist, because they're not able to use their hands, and therefore their art is not of any value.

Merry, i know what you are saying. Written about ds 'limited imaginative play', ds has good imaginative play, he can pretend a banana is a phone, he has imaginary friends, he can trick you 'there is a spider behind you' when there is not.

It boils down to do you want a dx of ASD or not. How useful is a dx of autism to you.

Whether its an accurate dx is not important to me, its how many doors it can open to identifying all the disorders/syndromes that ds obviously has.

Blimey,..thank you. In a very few weeks where we're still struggling with the news re ds's eyesight, that's a lovely thing to hear.

Star I know what you mean about not wanting to hog the group. I had to bite my lip on many occasions after initially raising queries as you could see that some parents had not had access to any information at all until that point.

Our trainers were really lovely and very helpful when the course turned to discussing individual problems on a weekly basis. It was nice to feel supported.