Sensory integration dysfunction - is this what causes speech/social problems

[mamadadawahwah]

Just re-read Carol Stock Kranowitz's book "The out of Sync child. What are peoples view on this book? She describes my son to a T. In particular she talks of vestibular problems, basically thats the process whereby the brain determines where you are in space. Kids with sensory probs have probs with the vestibulary function (apparently) and that is why they may shy away from experiences or seek them out.

I would really like to know what people think of this book, if they have read it. It explains my son so well and interestingly enough, it dosent mention ASD at all. It explains more than anything I have read how our neurology, when it gets disturbed prevents us from socialising, talking and imagining. Basically we have to have a sense of our environment in order to function.

Anyone who might be bored or who is looking for a fight, i would ask you to please remember the emotionally charged subject of this thread.

MotherEve Olga Bogdashina's book is great isn't it?

MotherEve Would you mind if I contacted you off list- I'm heading into research into autism (slowly- as ds3 is still only 6 months) over the next few years and I'm interested in what you're doing. I'm also interested in exploring the sensory aspects, and sensory processing difficulties. Don't worry if you want to remain anon.

mamadada we are not trying to bring you down- between us we have tried gluten casein free diets, nutritional supplements, ABA, RDI, OT, music therapy, donkeys (!), SALT. If you want advice on where to get these therapies/tests etc in the UK then there will undoubtably be someone on here who can tell you.No-one is looking for a fight.

oh and educational tribunals, lawyers- people on here have been there as well. There is a wealth of advice available on here which is UK based and realistic.

Quick hijack to say that I really liked the link to your work, MotherEve. As well as recognising quite a bit of ds1 and ds2 I've finally discovered why those optical illusions pictures never work for me. Even in your example I had to really concentrate to find the triangle amongst the circles. Thankyou!

Mamadadada- you said: "My son fits the picture of what you say in that he is slightly hyposensitive. He can sit for 15 minutes with his friends at the table and draw with them. Or he can sit and watch a video for an hour and a half. Yet, he cant understand me when i ask him to pick up his toy."

Before you get too drawn into the sensory programmes it is worth remembering that autistic children are often very complex. Read something like Lucy Blackman's book, or listen to Roz Blackburn. The children and adults are very rarely hypo or hyper- usually they are a combination of hypo and hyper sensitivities, sometiimes it changes. Lucy Blackman describes this very well, along with the effect this has on her ability to process language, walk from A to B, speak (she can't) etc.

The behaviour you describe may have some sensory issues (maybe your son foinds it hard to tune into human speech from example, maybe he finds it hard to respond as he gets locked into something) but it could also be something simple like not understanding the language used, or not being able to generalise commands learned elsewhere, or simply having practically zero adult directed attention.

mamadada.... hope you don't mind me asking but are you american?

It's just that, and I know this is a generalisation, I think there is a slight difference in attitude between american's and brits on things like this. I am not speaking from any great knowledge but you only have to look at american websites and read american books to see the difference.

I wonder if this is maybe where there is a bit of a clash of personalities.

The mothers on here you are talking to are incredibly well informed, have researched massive amounts about autism and all the things that affect it, have tried different therapies with their children and are doing everything in their power to help their child. Just as you are.

I think the difference is that they are not looking for 'recovery' (there was a thread about this very recently). And I think a lot of the american attitude is that you can 'recover' children with autism and there is a lot of this kind of motivational 'anything is possible' talk.

Well - I think the reality is that 'anything is not always possible'. But just because british parents are more ready to accept that, it doesn't mean they are doing any less to help their child.

I have probably not explained that very well.

I am just trying to explain why maybe you are being seen as a bit antagonistic. It does seem that you are discounting the opinions of some very remarkably informed people and it does come across as if you believe you just have to sort out this sensory stuff and your ds will be fine. I think all anyone is trying to say is that may not be the case. That autism is more complex than that. But that doesn't mean you shouldn't try.

In a nutshell mama, you came on here declaring your ds had been dx an asd. Now you are being so defensive about it. What exactly do you want from people? Lots of people on here have vast experience of asd and would be more than happy to help you if approached in the right way.
If I was in your shoes I would definitely seek a 2nd opinion as it does sounds as though you are doubting the dx.

the thread discussing recovery is here and I think hitc makes a reallly good summary of the difference between the UK and USA (have yet to meet a Brit who could read Let Me Hear Your Voice without losing their lunch- even if they are really pro ABA)

Mamadad I think just accepting your child has special needs of any description is the hardest thing you ever have to do, especially with asd as the life long disability thing just looms in the air and makes you just want to weep. I feel i had the opposite of a worse case senario presented to us, my ds was hypotonic and needed pt i was told he should have global stimulation due to him missing out on experiences as he couldnt walk/crawl in short i had no idea of the asd suspicions of the phycologist at the centre he attends so when he walked we thought it would be a matter of time before he caught up with his other development areas. Having things sugar coated certainly didnt help us and it was only after a period of significant regression that i began researching speech delay and odd behaviours that i became aware of the possibility of asd and insisted on a referral to cdc from a very old school wait and see hv. Its as if weve had to come to terms with things twice.The thing that scares me most is although early intervention is obiously crucial that from what i understand from other posters so much seems to be down to the childs potential that makes me feel very powerless. I have only really researched online until now have been meaning to read Out of synch, weve been gf/cf free for several months now and hard as i tried not to think i was desperatly hoping it would be some miracle for us, it wasnt. Its definately been of benefit as have the nutrional supplements but certainly not eliminated all of ds s difficulties. I know what you mean about sensory issues though they are not addressed ds has stimulation and pt but nothing for sensory integ. partly the reason for going to bibic, the other is to give dh a better understanding and acceptance as he is allergic to reading and thinks im asd obsessed. We are going 14-17th sept if you want to swop notes. Also you may be interested in the National light and sound centre but its very expensive.

Mamadad, we are only here to help and have no intention of being antagonistic. Just been there, got the T-shirt. It's not about 'giving up' and accepting your child's autism as something that does not evolve. It does. I spent the first year after diagnosis looking for major leaps forward, trying various interventions etc etc... I am much calmer and accepting of DD now and much more celebratory of every little step. This is the child who took a year to learn picture exchange at the first level and around six months of my mum and I and a complicated SALT system to get her to turn to her name. I know you feel wound up by professionals. You have to allow yourself to grieve, which manifests itself in funny ways (when I was grieving over DD's diagnosis I went manic, running from appointment to appointment, reading everything etc etc).

Message withdrawn

mamadadawahwah, I can identify with some of what you're saying here. We spent months saying to doctors 'we're worried he might be autistic', and when someone finally agreed with us I wanted to throttle them .

I doubted the dx too, but the more I found out about ASD, the more I realised it DID fit with ds' problems. It was my own ignorance of what ASD was that made me doubt it (because I thought all children with autism were very severely affected, unable to interact at all, etc). It is very definitely a spectrum.

Like JakB I went through a kind of mad post-diagnosis zeal - but it was a good thing in a way. I read and read, anything I could get my hands on, we did the gf-cf diet, homeopathy, cranial osteopathy etc. None of it did any harm, I'm now reasonably well-informed on the subject, and ds is still on the diet.

I was searching for positive/hopeful things to read too, and I enjoyed the Karen Seroussi book - she has a website in the States (ANDI?) if you want more info. There is also an equivalent organisation (and book) here in the UK.

I thought various service providers would be knocking on our door after the dx, but it didn't happen. You have to work out what you need and then ask for it, and usually pay for it too. I think we'd all agree with you on that one, it's almost all down to what the parents do.

Beccaboo, yes, I realised just how ignorant I was about autism. For ages before the diagnosis I thought, 'she can't be autistic because she's affectionate' (!) and the first private paed I went to see said 'it definitely wasn't autism'. Like RnB said earlier, though, alot of DD's autistic behaviours hadn't emerged then (her physical stims- eye rolling, teeth grinding etc, didn't emerge until her 3rd year. Now I realise that DD is pure autism, to her core! Mamada, I've just finished Early Bird and found it very helpful (ours was run by our very, very good head of ASD support service). Some basics that you already know but alot of insight into sensory difficulties, how language is processed, behaviour management etc. Find out if it's running in your area.

This thread has got me hooked. I have a 4.5 ds with no dx yet but suspicions of AS, his OT however thinks his probs are just sensory. We live in Portugal so luckily got an OT and school support x3 week straight away, & he has improved huge amounts this year, largely we think to the OT doing sensory stuff with him. I attented a sensory workshop last month with 2 american drs & they really do have a completely different approach to SI disfunction to what I've gathered from Brit sites. They almost see it as a separate issue to AS & I certainly left convinced my ds only had sensory probs & was no way AS!(not so sure now after reflection). Anyway after a year or so of Drs, OTs and various other proffesionals I've come to the conclusion that, like everything in life, dx's are very much up to that person's perception & perception is a completely individual personal thing. Not that drs don't know what they're talking about but they certainly don't know everything so always keep questioning & looking for your own answers. Should add that I absolutely HATE our dr but also love her as she opened so many gates to other great pro's!

Thanks wads and thank you everyone else. Wads, for me you hit the nail on the head. I'm very happy this thread has generated some debate and I thank you all for your information and opinion. That's all I want. I have no desire to re-invent the wheel and have learned a lot from what everyone said. I still have my own opinions of course.

Maybe someone else would like to take this in another direction and start a new thread. I am stunned at the number of parents with ASD kids who appear to have been left high and dry with respect to help offered.

I know that my persistence paid off in getting my son assessed quite quickly following my initial concerns. I was told the average waiting list in the N. of Ireland can be up to 18 months. I waited for about 4. What anguish other parents must go through in such a long time period is heartbreaking to think about.

Snap JakB, I was sure it couldn't be autism because ds doesn't have tantrums/meltdowns.

Mamadada, I honestly think most of the parents I've encountered feel they've been left high & dry. I suppose it's a bit of a political hot potato - if the powers that be acknowledge the problem, it's going to raise so many questions and leave them looking sadly lacking.

We're going to an introductory meeting to Early Bird next week.

What is Early bird? Perhaps I should start a new thread.

earlybird is an NAS run parent course. you need a dx to attend- it's good!

It's a course run by the NAS for parents of children with a diagnosis under 5. They run it in groups of 5 - 6 families I think over a few weeks/months. I haven't done it yet, but others will be able to fill you in.

Did your paed not mention it when you got the dx?

umm .... don't remember the paed offering any advice (he did send us a booklet published by the nas, so I might have missed it) Had no contact with anyone from our borough's services since dx, lots before!!

No early bird mentioned to me. Mind you i was incapable at the time of the dx of even comprehending what doc was saying after she said asd.

No NAS here either. What do they do at early bird?

Also, can anyone advise how RDI has helped their children?? Maybe a new thread one can be posted.
In fact i will post it right now.

That's disappointing . I think you're in a different borough to me (not sure where the boundary is) but have you joined a local support group or anything?

earlybrid trains local pros too deliver the course. there's no NAS in my city, but there is earlybird.

have to be honest and say so wrapped up in statementing , raising money to go privately for treatments, running family and completing a manic time at work that I haven't looked into support groups. Do you go on a website to find out about groups? Stupid question but can't focus at this time!