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.

Hi Davros. I have never "slowed down" with anything in my life and now is not my time to start. In my view my son should have been examined and received help a year ago. (This would have happened with no problem if we lived in the U.S.) Even at 20 months at his first SALT assessment (20 mins) I was told to take a wait and see attitude. I knew that was the wrong way to go and I screamed for help. So I was put on the waiting list which has lasted 8 months.

The 0-3 program in the U.S. is far more efficient than what I see here and the laid back attitude in the U.K. is just not acceptable to me. I have every right to question professionals about a lifelong condition diagnosed for my son. If a doctor diagnosed me with cancer or a brain tumour I wouldnt wait either. I would get out there and find the very best treatment I could. Thats because I am able to do it as well. My son is only a toddler. He only has me to fight for him. And in all honesty, this really looks like its going to be a fight. As all good girl guides know "being prepared" is key to not being taken off guard.

The triad of impairment to me lacks as much description as the label autism. I took the autism test on the ARI website and scored 29 out of 180. My son scored 54 out of 180. I then read up on the stats and studies they did. Ok, its only a test and its only an internet thing but its based on research too. So I have no idea what that means that I have such a high score. I certainly have never been worried about having autistic tendences but we all have them.

We are at a particular stage of knowledge re ASD. In 10 and 20 and 30 years time, we will be at a totally different stage. Like I always say 60 years ago, doctors said it would good to smoke. Calms the nerves, etc. If you go by what is knon medically now and presently, it has very little to do with what will be known in 30 years time.

I really dont care about what "label" they put on my son. I am going in to see the doc this week about my son and I am not going to question the label. Its not important to me to question that. They can call him the creature from the green lagoon for all I care. However, and this is a big however, I want them to give my son the appropriate help he needs. The efficacy of the help will be the thing which will improve his condition. I have a grandmother and an aunt who "believed" the bad news given to them by doctors. One took high blood pressure pills for 10 years when she had no high blood pressure. the other went blind due to taking medication which was far too strong for her condition. We actually sued the latter doctor who unfortunately died before we could get our hands on him.

Jim jams, "normal" has very little to do with potential. I couldnt care less if i have a "normal" child cause "normality" in my view is as wide reaching as abnormal.

Again the language is so important.

just wanted to say hi i know exactly where you're coming from we are waiting for assessment from the cdc but have been in contact with so many professionals who are not qualified to dx but seriously suspect asd i think its unlikely we wont get that dx. My ds is just two and i KNOW all your anxieties fears and frustrations~hugs. We ve booked to go to BIBIC as i want to be able to help ds on a personal level at home in addition to any other help i can obtain, have you considered this?

Hi louismama. Yes, i was supposed to have the telephone interview with bibic yesterday but cancelled it after the dx cause i was so emotional. Might phone them again. I think it would be money well spent. Just reading a piece now by Lorna jean king, on sensory integration -makes very good sense.

so glad you had the courage to get your son assessed quickly. What led you to believe there may be problem, if you dont mind my asking?

Message withdrawn

But the triad is the essence of autism. It is what defines it. At your son's age it is very hard to know where in the spectrum he is, and he could be in the 3% that recover. It's useful to read up on autism and understand the sensory issues (especially as they really explain a lot of behaviours) and also the biomedical ones but you do have to be careful to be a)realistic and b) not try and do too much at once (if only because you end up not knowing what the hell is working and what isn't).

The word autism doesn't mean that a child is x y and z and they all fit the same mould, but it gives clues as to a child's difficulties and the type of intervention they will benefit from. From a practical point of view it opens many more doors than a diagnosis of say sensory integration dysfunction does. It's also a reason that clincians will diagnose early- they know that if they don't the child will get no intervention.

You will find that more doors open if you try and work with the professionals. Most are working with stretched budgets. If you can afford to, pay people to do the extras- expecting immediate, regular OT for example is unrealistic (there are kids who can barely walk who don't get OT) but if you can afford to pay for it and you want to explore how it works with your son then it's a good idea.

The other thing to bear in mind is that in the case of autism you can't always give the best therapies as your child may refuse to access them. This term my son has been receiving regular SALT and music therapy at school. Trouble is he's refusing to enter the room (after a successful couple of sessions). I've no doubt that both would benefit him (and will at some time- the school are working on it), and we've waited years for music therapy-- but if he won't go in the room, he won't.

mamadad- but "normal" is important- or at least its important to take on bored that in autism the end point is likely to be different than the NT end point. The developmental pathways are not the same, and whilst you can look at therapies like RDI which aim to encourage "normal" development you are still working within the framework of a neurology that is abnormal.

will post later have to go now ds is brushing my hair to get my attention hes very proud of himself as hes never done it before

agree with rnb- the picture will unfold as your son gets older. At 2 my son appeared to be very high functioning to the point where I was told he defintiely wasn't autistic- his signs were certianly subtle. Now at 6 he is clearly autistic- and at the severe end of the spectrum. OOther children who at 2 looked very similar to him have gone on to be high functioning. It's very much a wait and see with regard to the final picture. With the diagnosis though it is easier to start intervention.

I too have to disagree with the idea that a child's progress is somehow only limited by the efforts of the parents. My ds1 was one of the lucky ones. At 2yrs old he was very much withdrawn from the world. At his 2yr development check I don't think he even realised that the Health Visitor was in the room with him. He didn't respond to any of her instructions to build, point, do a puzzle etc. The idea of him surviving in a mainstream school was insane as far as I was concerned. He was diagnosed at 3.5yrs with ASD. He got no OT at all until he started school. I did speech therapy exercises and games with him and followed the portage worker's advice about play therapy and sensory issues. I certainly didn't do anywhere near as much as some of the posters on here. Ds1's brain seems to be slowly re-wiring itself and he has made a huge amount of progress. It's not because of me. It just seems to be the way his body and brain work.

Sensory issues affected ds1's ability to communicate to a certain extent. His hearing was so sensitive that he tended to block out all noise - including speech. If he couldn't hear words then he couldn't start to copy them. Even when he got past that and started to talk it was obvious that something else was responsible for the lack of communication. He didn't instinctively pick up speech in the same way that NT children do. He had to be taught piece by piece : nouns, verbs, on/in/under etc. Even now he can still sound like a tourist who has been given a phrase book to get around with. If, for example, he hasn't heard or understood something he will ask "What have you said?" rather than "Pardon?" or "What did you say?". The other issue with communication is that he often genuinely forgets that people are unable to read his mind or see what he can. If he's reading a book and wants to know a particular word he will ask me - but without actually showing me the page. He knew which word he meant and so assumed that I knew too. What I'm trying to say, in my usual rambling way, is that yes sensory issues can affect speech and social skills but with ASD there is far more to it than just that.

mamadadawahwah, I would say, don't dismiss the expertise in this country. I have met several professionals who understand my daughter so well and have incredible ability and foresight when it comes to teaching autistic children. I would also say don't dismiss the triad of impairments. Every single child with autism I have met shares that triad- from a non-verbal child like my daughter who is very severely affected to a child whose mother is on my Early Bird course who is very high functioning. And children are not equally affected across the triad, some areas may be more affected than others. I'd agree that sensory issues are part of autism but they are not the whole picture. You will try things that will work with your son, and try things that won't. It really is a matter of trying many different approaches and working out your son's very, very unique mind and a way in.

Louismama, just wanted to pass on a website address with many intersting stories but more lots of hope. On this site is the story of Karyn Seroussi who changed her child's diet onto casein and gluten free everything.

This site is positive, upbeat and states attitude is everything and i agree. Also it says what I said, read as much as you can, as quickly as you can and learn from any source you can without delay. Start as you mean to go on and make sure you have an attitude that is infectious with the doctors - be positive and upbeat (hard I know) but try not to let them think you will be beaten. Your child will stick in their memory that way I think.

anyway, if you have the time and if you havent already checked, there are so many web sites of interest.

In response to comments on this thread that I am denial, I wonder what the motive is behind trying to "bring" me down to earth. What has happened to another child and the progress made by another child has absolutely nothing to do with my child. I am puzzled by some of the underlying attitude my comments have received. I accept nothing at face value for myself and certainly dont intend to for my son. "Can't" is not a word in my dictionary. I dont even use the word no with my son.

I don't think people are trying to bring you down to earth, I think we've just been there. We've all stayed up all night reading, got over-excited about a certain therapy or a vitamin pill. We've realised that autism is so complex, there is very rarely 'recovery' or a simple answer. I think we are trying to be supportive.

I would be curious to hear from people who think like me. If you have something to say which is intended to make me "face" reality, well, first explain to me what is reality??

For anyone who has had a recent diagnosis, particularly those of you with very young children, I would strongly suggest you look at as much research and read as many personal accounts and web sites as you can. Some american sites have excellent research and an upbeat positive attitude which in my opinion has instilled me with much hope and a much better scope of things.

mamdadawahah, erm, sorry, but between us I think we have probably read virtually every new piece of research, book, website etc that exists.
We are not uninformed.

I dont think its "supportive" to be accused of being in denial as one poster said. Thats not very supportive. I am not in denial anyway. What I deny is that doctors know everything or anything about autism. Like I said in 30 years time the whole autism thing is going to change. WE will undoubtedly have a urine test or genetic test for autism which can be taken before conception. We will know more about the triggers, particularly environmental triggers. I firmly believe that autism is on the rise due to environmental factors. I dont need to prove this, I just need to believe it. If anyone disagrees with that so be it, thats your option. However, that dosent help my son right now.

What will help my son is fighting for the best services he can get and informing others that help is available in the form of information.

I just googled autism research and came up with 5,720,000. I googled cancer research and came up with 78,600,000. I am sure in 30years time autism research googles will come up with the latter figure or better.

I've just completed a university module on asd and sensory issues - I was able to choose the topic and thought this was an area I didn't understand and wanted to know more about. We had a private OT report on J and one thing she mentioned was that children with autism need 'movement breaks' to help them transfer their learning from short to long term memory.

The only main reference that I could find to this was on the Autism Today website.

It really rang a bell with me when I watch my son practising times tables whilst lying on the floor rolling around and then crawling through my hubby's legs, finally ending up lying on his back on the floor with his legs in the air! He was much quicker at giving the answer than when we had him sit in a chair to practise - not sure the school would wear that though!

One thing that I came across as part of my module - having read a lot of personal accounts of autism especially - was that the 'triad' is what is seen from the outside by the 'experts' and that many diagnostic criteria for ASD's take no account of sensory isses - compare this with the criteria for depression - this takes into account the thoughts and feelings of the 'depressed' person - when children are young they may not realise that they have a different perception of the world, and quite how this could be included as part of the diagnostic criteria I don't know - but there certainly seem to be many accounts of adults where the sensory issue looms large in their life ...

The work I did on sensory issues and trying to understand them from our point of view is here if you would like a look at it. I can recommend Olga Bogdashina's book on Sensory Issues - it's similar in a way to Krantz's book but does relate the sensory issues more to autism.

Hope this is of help

Jak, i was talking about parents of newly diagnosed children. Plenty of people come on to this web site who wont know what autism is. Its u to them to garner as much information as possible. However, there is no point in re-inventing the wheel either. They dont need to do it on their own which is where those of you who have been informed can be helpful. But we cant know ALL there is to know.

Hi motherseve, thanks for the link. Just looked at it. Mirrors a lot of Carol Stock Kranowitz (though your diagrams are easier to understand)

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. My biggest point in all this has been that the docs mentioned nothing about this issue, i.e. sensory integration/dysfunction. Its crucial. It dosent stand alone, it affects the entire ability of the child. The triad of impairment means nothing if it isnt taken in context of the childs sensory perceptions. Sight, language, movement, imagination, its all affected. Yet, at his initial assessment, (before i was clued into all this) the O.T said he didnt need any extra help cause he moved well and didnt have any real signs of motor problems. HUH????

Just joined a couple of other forums in the U.S. and people agree with what i am saying. Maybe the U.K. approach is different, i dont know.

Thanks mamadadawahwah. Glad you liked the diagrams!

The hypo/hypersensitive stuff was a revelation to me, as well as the fact that our children may be hypo at one time and hyper at another - it's even made me question the ADHD label that we got intially - perhaps it was the lack of stimulation in the vestibular / proprioceptive senses that J was finding for himself in his whirlwind type movements ... but not recognised as such.

"the O.T said he didnt need any extra help cause he moved well and didnt have any real signs of motor problems."

Exacly the same here ... we're thinking of going down the private route for OT - thanks to a well off aunt who has left J some money for his 'education'

Mamadadawahwah

I understand you are in shock, you are upset and you are searching for explanations and ways to help your son. But you do come across as quite antagonistic. People like RnB, Jimjams, JakB and Davros have autistic children, they know what it is like to live with autism, they have read and researched and tried their best. Why are you so determined to disagree with everything they suggest? Likewise in terms of accessing help, although it is important to be prepared to fight and you almost certainly will have to, also be prepared to listen and see what you are offered. There will be some incompetent professionals but there will be plenty of able people trying to help you and it's not good to p*ss them all off in the first few weeks.

Antagonistic??? I dont think so. I am not trying to provoke an argument. I am stretching as far as I can to see if someone has a similar take on this whole thing as me. I have no intention to discount the experience and knowledge of anyone on this site or anyone in general, particularly when it has to do with their pride and joy, i.e. their children. However, I dont believe the story ends at anyone's personal door.

If debate is antagonistic on MN then so be it. Funny i often get called antagonistic or even rude. I have NEVER been rude to anyone on this site and have NEVER tried to personaly antagonise anyone in particular. I might have made a few generalisations but that is what i see happening here now too. Are we going to make this debate a personal one again??? Is that the MN way?

Anybody else, please join in