Here are some suggested organisations that offer expert advice on SN.
Sensory integration dysfunction - is this what causes speech/social problems(84 Posts)
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.
Sensory problems are almost universal in ASD. They also occcur in dyspraxia, sometimes dyslexia and sometimes alone.
ASD is dxed according to the triad of impairments, but sensory issues may be at the root of that impairment.
Yes, Jimjams, I think so too. I wonder if sensory issues are every looked at alone as a neurological "issue" in terms of the "triad" and without the label asd? According to the book I referred to, sensory problems affect everything which is included in the triad, speech, language, sight, movement, learning.
Spent the ENTIRE night researching sensory issues. Read about 100 articles and many refer to what is ASD language would be a triad of impairment.
dont want to get hung up on labels but occupational therapy for kids with suspected asd sounds like it should be the first point of call. I know i am judging this from my own personal perspective and in regard to my own son but if anyone out there suspects asd or has had a diagnosis and has read the Carol Stock Kranowitz book, I would be very interested as would others. Research on "vestibular" function (that which connects us and reflects us through gravity) is fascinating stuff and a disturbance in this area allegedly can cause many of the problems exhibited in some asd.
I remember someone ( possibly Davros? sorry if I am wrong btw!) saying that it is virtually impossible to be misdiagnosed asd but more likely to go undiagnosed.
Pro's making the dx of asd/autism have to follow a very detailed criteria and unless the child fits a dx will not be made.
My own personal experience being that my dd does exhibit asd traits but as RnB says does not fit the triad, therefore will not get an asd diagnosis.
From what I have read and what I have been offered by the CDC who assessed my son, no one suggested that the problems my son has could be helped with a O.T with perhaps a post grad in sensory dysfunction.
A family member who works in Australia spoke to me over the weekend and asked me a lot of questions about my sons "sensory" problems. she is currently completing her post grad work in neurological dysfunction or some such, dont quite know but she's a bright cookie.
Anyway, she pointed out that ASD is a spectrum and they call it that for a reason. Any child who is diagnosed under this spectrum is as different as the next one and there is no "handle" on ASD despite all the research in the world. She says that ASD seems to be a mindset of the medical community as much as it is a reflection of real "impairment".
She also pointed out that during her undergraduate years in the USA that a slightly different approach is taken there in terms of outcomes. In her experience she noticed that children with suspected ASD are not viewed as having a specific "potential". Of course we are all capable of just so much. I know i wont be a rocket scientist at my age, but if i put my mind to it i suppose i could be by the time i was 60. What she means is that she has read british research and american research and the language appears to be different. A child's potential she says is only limited by what you put into them as children and what the children want to achieve themselves. There is no real "point" where a child will "stop" progressing. That she says is an impossible and dangerous attitude to take on.
I was interested in this cause "the out of sync child" book said the same thing. Also, i believe it cause it makes sense. I personally find the u.k. web sites a bit depressing. Further my son's doctor gave me the "worst case scenario" just like a solicitor would. they tell you the worst so you dont get disappointed later.
As much as I dont want to get too hung up on the label autism, i wouldnt want to get hung up on the "triad of impairment" either. Yes this is all relatively new to me but referring to the "triad" without personally having reviewed the testing methods criteria, research and applications, I find it really difficult to acknowledge it as anything yet, except three words.
Everyone is going to come to a discussion like this with their own personal viewpoint and their own personal knowledge of who their child is and what they are like. All I am saying is that the word "autism" has such a wide scope, as does the "triad" thing.
My own sons "downfall" on all the autism tests has to date only been in respect of language and fine motor skills.
Is he really on the ASD ? I dont know. What i have found though is a sometimes almost imperceivable negative attitude from doctors friends and family that what he has might be called something else. Labels are not just labels. They affect the way we react. If my husband knows I have bought Lidl ketchup and put it in the Heinz bottle he wouldnt eat it. Know what I mean? Myriads of studies have been done on labels.
What treatment and what attitude would my son elicit from others if he was referred to as someone with a sensory disorder as opposed to autism. I know people out there tut tut at the word autism, how awful etc etc. Thats people. Howver, if they heard he was maybe sensory dysfunctional, what diff would that make, not only in their reaction but in the kind of treatment he would receive.
Maybe i am not making myself clear. I know what i want to say, but sometimes it dosent come out clearly.
Blossom, dont you think the reason its virtually impossible to be diagnosed with ASD is because the spectrum is so wide?
During assessment of my ds, the OT spent about 15 minutes with him and said he was ok except for a bit of looseness in his fingers. He kicks ball and climbs ladders etc but finds it hard to throw a ball forwards. (Can throw it backwards no problem.)
At the time, i was happy with her assessment cause it meant to me that he didnt have any major problems. Now, after reading tomes of information, i find that sensory "dysfunction" can affect everything in the so called "triad". Thus, when i go back for his next meeting, I want him to have all the O.T he can get. Play therapy, music therapy, gymnastics and a trained sensory therapist. Am I going to get this on the NHS?? Well I dont know. Are they going to say, his problems are autistic spectrum? Are they going to say we have to teach him to talk first? According to the research on sensory dysfunction teaching a child to talk just dosent work. The senses have to be opened up first. Finally, i am making some clarity headway here, I think
I saw an OT last week. I was amazed at the logic in what she said, the fun my ds had and the impast it made on him. No one in the NHS world had suggested an OT, it was the private Ed Psych who sent us that way. Our son has been diagnosed with a severe language delay or ASD depending on which Paed's diagnosis you decide to run with. We are beginning sessions with an OT next week.
Shey, so glad you responded. Do you pay for this privately or is it through NHS? Any tips you have gleaned to do at home with your child re sensory disorders?
privately.........resources pretty stretched!!!!
I went straight out and bought a trampette so we could have something inside. I also bought a huge fitness ball. The OT suggested I wrap ds up in a duvet and squash him (not literally but almost) every morning. He loves this. She said wrap him up tightly in a towel after a bath and if poss massage in some cream. Pat/slap the nderneath of his feet before putting on shoes. The ball was to tip him over so he lean down on to his hands. She swung him about on tyre suspended from the ceiling but we can't run to that. Seeing an OT next week who has been recommended so will have lots more tips soon. Hope this makes sense two children climbing all over me.
My Ds2 is nearly 4 and has no diagnosis. I have read the Out of Synch child and feel like you that a lot of the stuff about vestibular function also applies to my son. Some professionals have also suggested that my ds2 is autistic but others are certain he is not. I have had my moments of thinking he is but as he gets older I feel more certain he is not. However he still has considerable problems in all areas of development and in many ways professionals seem to have less idea what to do with him than if he was autistic.
I am less concerned with a diagnosis than I was as I come to terms with the actual problems my Ds2 has and accept that they are there whatever the diagnosis. At the moment you are desperately trying to find an explanation, any explanation for your son's problems as long as it's not ASD. What I am trying to say is that ASD is not necessarily a worse diagnosis than any other although it is important that it is the correct one.
RNB my heart (what's left and not already broken) goes out to you. They only take 45 minutes to assess a life long "condition" then they leave you in the lurch for the next 18 years. I know a lot of people with AS/ASD kids and one parent in particular told me the best advice. "Unless it is humanly impossible, do not accept the word "no". that is going to be my motto in terms of getting help. My doctor and the SALT who first assessed my son both said, "he is very young, what brought you to us?" I thought that was an odd question. In my opinion, I had my doubts way before. My own GP simply commented, isnt he making two word sentences yet? I mean, talk about interested. I pretty well knew from the get go that I will have to fight tooth and nail.
If resources are limited, then i suppose one must pick and choose the best. I just dont want to waste time on someone elses "theory" of what might work when money could be spent on something far more effective.
can't say more as ds1 is kissing me (hence the spelling error!)
Saker, the reason why i like the book is because it puts an explanation to what "senses" are about. I didnt know all that before and it all makes perfect sense. I dont know, maybe that is what autism is all about. But, at the doctors I didnt hear any of this whilst she was blabbering on to me. They just say ASD and heres the help, albeit limited, that you should get.
Why dont they explain more. A large majority of parents must go away in complete ignorance and shock. thank God, I can read and write and use the internet. Ok, i dont believe all i read but it has been such a help. It must be soooo hard to be isolated.
Shey, yes i would really love to hear more. I am right now trying to find some OT's with sensory training. Not very easy to do i must say. I suppose at the end of the day, our children are our responsibility and its up to us to do all we can. I have never trusted myself to a doctor and i dont intend to do it now with my son.
I should add one caveat to my spiel. I am glad I went and had my son assessed. I am soo glad that i am going through this now with him, rather than in 2 or 3 years time. If I had denied there was a problem, well they would have just got worse and i would have to face a multitude of uncertainties in the future.
I agree that the book explains things well and the stuff about vestibular function made a lot of sense to me. Even little things like Ds2 runs up and down when talking because it stimulates his vestibular system. But I have to say in my entire dealings with the NHS and we have seen OTs, PTs, SALTs, paed, clincal pysch, ed pysch etc no-one has even mentioned sensory integration dysfunction as a possible label. I don't think it is a common diagnosis in this country. I'm not sure where it starts and things like dyspraxia end.
I don't agree with your family member from Australia that the spectrum is so wide that its meaningless and autism is something almost invented by the medical community. In fact I find that view almost offensive. The spectrum is wide but people with autism have something in common which, I'm afraid, is the Triad of Impairments and now the modern view is PLUS sensory issues. Why are you so keen to pursue the sensory side only? How are you going to teach your child? If you do a lot of therapies and interventions how are you going to monitor and assess what is effective and what isn't? I think you should slow down and start to find out just what is available to you, including charities who often provide music therapy, cranial osteopathy, FC etc. The sensory side is interesting but it is just one part of the picture.
If you fight tooth and nail on the assumption that every professional you meet is incompetent or at least under/misinformed then you're going to have a very tough battle. Some of them are of course, we still have to deal with them, and many are not.
Your Aus family member said "A child's potential she says is only limited by what you put into them as children and what the children want to achieve themselves." Sorry but that's not true. Not for any child, and not for autism. If you are working to overcome the neurological problems (triad and the sensory problems) then you still have to work within that child's neurological framework. And neurologically it is now recognised that autistic children are different. You can work with what yo have, but you can't make it normal.
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