Is the triad just examining responses?

[Ian Jordan]

I am becoming more convinced that the triad of impairments that is used for diagnosis of ASD spectrum is actually looking at a cognitive response to physical problems due to inappropriate sensory information input and feedback loops. This would explain why changes in biochemistry (diet / heavy metals etc), vision, auditory and kinesthetic (movement), are so important in ASD. It would also change the emphasis to resolution of physical difficulties becoming paramount and each child could be treated as a matter of course to an optimum physical level thereby making it easier for the child to access its optimum functioning. The reliance on treating responses by using mental health and psychologists would be relegated to a secondary role rather than primary. It would however make their input much more effective as the child should be able to cope with change more efficiently.

 

Diagnosis methods would have to be revised to make assessment more clinical (research would have to be undertaken into best methods) and therefore many of the "wooly" diagnosis of "I think he may be somewhere on the spectrum" could be avoided.

 

I believe that virtually all children on the spectrum have some sensory problems but in each child some of the sensory systems may develop normally or in an inappropriate way. It seems logical that when a sensory system develops inappropriately, it should be treated not just ignored as "part of the syndrome" AS THEY ARE NOW! Should a campaign be instigated to ensure ALL children have all their sensory symptoms treated.

 

The question is

 

Does your child have sensory problems and do they impact significantly on their lives - and have they been addressed properly by the system.

 

A brief check list

Vision, hearing, balance, coordination, touch, taste, swallowing, speech, biochemistry, memory

 

Comments would be appreciated

[cmuir]

Hi

 

My son is being assessed for "something on the spectrum". I keep telling specialists that he has sensory issues. Some of the signs being:

 

- extreme dislike of having hair brushed or teeth cleaned

- hands fly up to his hears when he hears a noise he dislikes or an unexpected noise

- he doesn't seem to feel the cold eg wears clothing inappropriate to weather

- takes all his clothes off at every opportunity

- when running a bath and is forewarned about not putting his hand in bath water because it's hot, he'll ignore and put toys in hot bath water and apparently not feel it (even when it's burning hot!)

- the list goes on

 

These so-called specialists haven't listened to a word I've said and have ignored the sensory issues to concentrate on other things. After more than 3 years of battling, we still don't have a diagnosis.

 

Read a fantastic book called The Out-Of-Sync Child by Carol Stock Kranowitz. Amazing. I agree with everything you've said after having read this book.

 

Caroline.

[call me jaded]

Accessing the NHS by primary diagnosis instead of need is discriminatory in the extreme. I believe that addressing these health inequalities is the major campaign that all people connected with disability of any kind need to get behind.

 

And yes, I also believe sensory processing difficulties are central to autism and whilst behavioural therapy has its uses, unless the sensory difficulties are dealt with, such therapy is merely expensive papering over the cracks.

 

I'll back you in any way that I can with what you want to do on this.

[jomica]

Ian - I've pm'd you.

[call me jaded]

Ooops. Forgot to answer the Q.

 

 

Vision - assessed as having visual problems, but not offered any more appointments until he wore his glasses

 

 

hearing - several hearing appointments where they cold never discern his hearing ability because of glue ear. I suspect he wold benefit from AIT

 

balance, coordination - have had a total of 4 OT sessions in his 11 years. Tried to get dyspraxia exercises written into his IEP but the staff didn't understand what I was going on about. We take him horse-riding.

 

touch, taste, swallowing - showed numbness around his mouth when he was smaller, heightened sensitivity to touch. We did the Wilbarger brushing protocol bt that made him hyper, joint compression much more successful, did not latch on well and was bottle fed. If I'd known abot cranial osteopathy then we'd have been getting that done.

 

speech - non-verbal, is only now getting regular and appropriate therapy

 

biochemistry - do all of this GFCF (4 years) and a very mild form of chelation which have both reduced the stress on his overloaded immune system, actually allowing development.

 

memory - not done anything specific. He used to laugh at me when I gave him more than two instructions: 'take this to the kitchen and put it in the sink', if I added 'and bring back a spoon' that would induce hysterical laughter. Improving slowly.

 

 

Currently none of the above accessed via the NHS, shamefully.

[Sallya]

I could put ticks by hearing - he doesn't appear to hear what you say unless you talk directly to him using his name, or make an effort to get his attention - he has had checks by an audiologist and found to have good hearing. He also finds loud noises and assemblies or music lessons distressing, and school addressed this by letting him go back to the classroom or choosing before hand if he wanted to join in- his tolerance has grown and he gets less distressed depending on how is is on the day.

 

Speech- He had speech delay and could say only a few words at 3 1/2 - he had speech therapy within a small group for about 2 years, and has been assessed yearly by SLT at school - she has given the school a list of things that he needs to work on, and also the areas in his language which need to be addressed.

 

Balance and co-ordination- He has poor fine and gross motor skills, handwriting and hand to eye co-ordination. He has had occupational therapy in regular blocks since he was 5, and he has also been following a programme called 'Jump Ahead' since he was 5 which is physical exercises to address gross motor skills.

 

Taste (and smell these seem to go together with him-if he doesn't like the smell he won't taste it) he will spit out anything that manages to get past his nose if he doesn't like it. He goes off food that he has liked in the past.He likes sweet and ascidic food oranges and cold such as icecubes .

 

Memory- He remembers things from the past, really well. He can pick up people's names very quickly and can often amaze me with something he has remembered from a while back,but can't remember something he has been asked from 5 minutes ago.

 

He recieved the SLT and OT before he had a diagnosis, and I was frustrated at the time that the experts weren't getting to the root cause of his problems, but with hindsight, he has benefitted from early intervention for speech and co-ordination, so I think it is really important that sensory issues are looked at as early as possible.

[jb1964]

The question is

 

Does your child have sensory problems and do they impact significantly on their lives - and have they been addressed properly by the system.

 

A brief check list

Vision, hearing, balance, coordination, touch, taste, swallowing, speech, biochemistry, memory

 

Comments would be appreciated

 

Hi Ian,

 

I would have to answer, yes (to all of them) she has significant problems and no they have not been addressed.

 

In fact recently I was talking to the CPN and going over previous letters that we'd had saying my daughter was going to have this therapy and this appointment etc - some of which haven't seemed to materialise.

 

The CPN said she would check them out - and rang me the following week to go over everything. She said that one particular thing had caused a massive political storm within their unit (CAHMS) between departments.

 

The OT had seen my daughter during one of her appointments at the unit - my daughter was totally unresponsive to her (she'd not met her before) and the OT asked her whether there was anything she struggled with and would benefit from help with (she is 12yrs old) - my daughter answered 'no' - which knowing my daughter is a pretty obvious response from her (she doesn't want to believe she has any difficulties and doesn't was anyone to know she has AS etc).

 

Because of her response the OT had closed her case on her despite the fact that during her one of her assessments (Movement Assessment Battery for Children) her overall score put her on the 1st percentile of percentile norms - no-one had even been told that she'd 'refused help' and therefore wouldn't get any.

 

The Consult.Pyschiatrist has apparently gone berserk at this saying that there is a difference in patients refusing help and when they definitely need help and could be encouraged (which I believe my daughter can be - she is always scared of the unknown and worries about things - but once she has seen it or done it she copes better). We're still waiting to see how this goes.

 

Jb

Edited April 8, 2006 by jb1964

[jen]

ASD children can show different sensitivity. It may be to food. It could be tactile or auditory. However, we need to deal with the cause of ASD and this is where research needs to be focused in the future.

 

Many people believe ASD is a neurological condition.The nervous system and gastro intestinal system is also affected. It turns out that a great many individuals with behavioural and neurological problems have some fundamental disorders arising from their digestive systems.

Sensory sensitivities can also cause problems such as stomach and bowel problems. Auditory and visual or tactile sensitivies. All these seem to come from a nervous system that is being overloaded. Looking at triggers can help. Medications such as melatonin, baclofen,amtriptyline can also help. OT can help and coloured lenses. Diet and eliminating some foods can also help.

 

We need to look at the main problems rather than dealing with the side effects of ASD. Many children with ASD will have an additional diagnosises. This could be epilepsy, ADHD etc but this secondary diagnosis is also another neurological cause.

 

Nerves communicate with one another through electrical and chemical signals. Neurotransmitters and the messengers. Exercises for sensory problems stimulate the nerves in certain ways to respond to certain stimulation and neural pathways can be built. Coloured lenses reduce the amount of sensory information going into the brain. Martial arts help with orienting your body in space,muscle strength, co-ordination, balance, discipline and focus.

 

The research should focus on what is causing these neurologial problems. Removing certain food groups in ASD children have helped some children. This is because the chemical reaction has stopped or been reduced. This has stopped the inflammation and hence the person feels better or behaves better.

 

May be research needs to look at how chemicals are broken down at the beginning of digestion. Enzymes have a key role in the first process of breaking down food. Digestive enzymes are notoriously effective in facilitating and supporting intestinal function, immune system health, detoxification and many other things.

It is well documented that if people are deficient in nutrients than there are different problems that can occur. Lack of iron and vitamins can cause all sorts of problems.t Maybe our childrens bodies are not able to break down the chemical in the first place which is causing the problems. If our children are not absorbing the nutrients than problems will develop.

 

Many of our children have problems with food. Do our children have damaged or leaky guts which mean the food is not being processing correctly. Does this mean insufficiently broken down food particles and other things are crossing into the bloodstream when they shouldn't. Hence the immune system reacts. Research has been undertaken in 1996 on ASD children with intestinal damage. This indicates that a greater probability of leaky gut may exist with children with ASD than in the general public.

 

Could the answer be to look at the start of how our children break down the food and how efficient there bodies are at doing a basic neccisity

Jen

[Two naughty children!]

I confess i don't understand most of what you said sorry I'm a bit thick

 

My daughter has

 

Touch - problems with being touched by anyone other than immediate family

But comes and cuddles us to the point of pain

Clothes are a particular problem will only wear what feels right and always wears thick wooly tights even in summer, finding shoes that don't feel funny is almost impossible

 

Smell - Won't go anywhere unless it smells right - the advantage of this is she hates McDonalds - the down side is you can be talking to someone and she will say we have to go because they smell funny (how embarassing)

 

Visual - Constantly pulls curtains because she likes to be in the dark - but not completely dark

 

Taste - cannot have food mixed together - no cottage pie, but will eat mince beef gravy and mash potatoes seperately

 

Balance and coordination - 'NC1' is 10 and still cannot use a knife and fork , not through lack of trying it really upsets her to the point she will now not eat away from home. She also still has problems with buttons and zips.

Her balance is good and we put this down to her horse riding since she was 3 and we have our own horses so its a case of having to develop or fall off (I'm such a cruel mother!!)

Edited April 8, 2006 by Two naughty children!

[Zemanski]

I did the sensory profile from Olga Bogdashina (Sensory perceptual issues in autism and asperger syndrome) on Com and it highlights visual and auditory sensitivities as his main problems with vestibular and taste his least affected senses but even in these areas he has significant problems.

 

I know, as you've met and worked with Com, Ian, that you will agree that he has issues across the board but that his visual perception is his main area of difficulty.

I strongly believe that his prosopagnosia is his major barrier to social functioning - how can he learn to build and maintain relationships effectively if he cannot identify people and has to start from scratch each time he meets someone because he cannot connect prior information about a person to the person he is currently talking to? Also as he can't see a whole face and focuses mainly on the nose it is virtually impossible for him to be able to read emotion and moderate his responses to someone according to their emotional expression.

 

I just read Robert Schultz's paper, Dec 2005, on the role of the amygdala and facial processing in autism - fascinating and it makes sense to me. He is proposing that the development of the amygdala and it's influence on other areas of the brain is central, not only to the processing of facial identity but also to the development of social knowledge and that this may then impact on the development of other senses causing the patterns of sensory development and the associated behaviours we see in autistic people. This fits very neatly with what I feel about Com's difficulties and the reason I see treating his prosopagnosia as central to helping him in his general development.

 

another thing that has confirmed me in thinking that the sensory issues are the root of the developmental differences in autism is a recent conversation with Com.

 

Com has, for several years, avoided discussing AS but a couple of weeks ago he asked what exactly AS is - is it a condition that affects the brain in it's own right or is it a combination of different conditions coming together in a particular way?

 

Wow- difficult to answer and he's only 13!

 

We talked about systematising and the extreme male brain - he didn't like the male brain idea but I think that was mostly an inability to get past the idea of disassociating male machismo and brain functioning. The systematising sort of made sense but it was just a way of thinking, it didn't explain why it happens.

 

Then we visited theory of mind - yes, he has problems with this but again it is describing not defining autism.

 

Weak central coherence made absolute sense to him and he agrees he has to build meaning from detail because he finds it difficult to see the whole picture, or gestalt - this is certainly true for facial processing where he sees only one feature at a time and so has to build a picture by piecing together disparate data. But again, it is descriptive rather than explaining why he does it.

 

Finally we talked about Donna William's idea that autism is a fruit salad; a combination of neurological/sensory issues coming together to impact on a persons development and causing them to react to the world in particular and quite individual ways. Com loved this idea; he says it is exactly what he feels, he thinks almost, but not quite all, his problems are sensory and that this explains why his is as he is and why he has problems with theory of mind and social interaction and weak central coherence.

 

 

If sensory issues are the root of autism and can define autism then I have to look at my whole family afresh - Com we already know about, but there's me with visual differences (Ian knows all about these - I use them to stim! ) and proprioceptor problems and tactile and auditory and taste issues; Dot with dyspraxia, dyslexia, visual processing problems, proprioceptor problems, etc, and Nemo with his ability to see colour and tell what combination or red, blue and yellow is needed to recreate it in a flash, and his extreme responses to chemical smells and to painkillers, etc.

Nemo is almost certainly AS, we've known that a long time, his developmental history is too like Com's to have much doubt; I've just been referred for OCD and anxiety and the doctor has agreed I have 'autistic traits' which need to be investigated; and last week Dot's senco called me in to express concern about her moving on to high school because he thinks she is socially withdrawn and probably on the spectrum but that she doesn't show enough traits for it to be either diagnosed or recognised as an SEN issue.

 

Ho hum

 

fascinating

 

Zemanski

[LizK]

Ian,

 

Really interesting post. Our preschool teacher has just done an autism course at Birmingham School of Education and she's lent me the module on sensory issues which I'm wading through. I think Olga Bogdashina helped write the module and it's fascinating reading. Only just made a start on it but it seems to be saying something along the lines if your post that sensory issues could be at the crux of ASD and that the other features of the triad are a response to that. Some of the reasoning struck me as oversimplistic and trying to make the answer fit the hypothesis (rather than the other way round) but in general it made a lot of sense and made me look at autism from a different perspective. Was just saying to me DH this am that if this is all true then surely OT assessments and treatment ought to be the main stay of therapy rather than an option tacked on extra that you may or may not get a taste of

 

Just done Earlybird and they were saying there that the triad should really be a square with sensory issues being the 4th component

 

My son is four yrs old

 

Vision - not aware of any problems but he has a language delay so he may not be able to tell us. Doesn't seem to have any difficulties though recognising people or places, doesn't get upset if things are changed in a room and is not bothered by fluorescent strip lighting

 

Hearing - he seems hypersensitive to auditory stimuli. He'll have the TV turned down very low, same with the computer, gets distressed if I put the CD player on, hates the noise of the cooker beeping and is very distressed when alarms go off. Dislikes soft play as it's 'too loud'. If we are in a noisy place he will insist of wearing his aht or pulling his hood up to cover his ear. Can't filter out backgroud noises. Seems to be sensory overload in noisy places

 

Balance and coordination - he is clumsy, falls over a lot, used tot oe walk as a toddler and whe excited now hops along like a flowerpot man!. Late to jump, still can't hop. Fine motor skills are improving a lot but his pen control is immature compared to his peers. He has an amazing ability though to tolerate being spun round, loves going round ad round on the spinner at the park and last summer kept dragging me and H on rides at a theme park that were full of older children and which gave us motion sickness ! Didn't bother him at all . Think he must have some hyposensitivity in this area!

 

Touch - seems fine

 

Taste - eats well generally though doesn't like food with 'skin' on so I have to peel sausages and roast potatoes for example !

 

Swallowing - no problems. Had reflux until he was 2 yrs old

 

Speech - biggest area of delay. Approx 12 month expressive and receptive delay in speech plus disordered speech development. Usual pragmatic difficulties. He has difficulties with processing speech he has heard and we have to reduce our language and repeat things several times.

 

Biochemistry - think has partial cows milk protein intolerance, about to send of urine sample for the Sunderland test. Is anaemic

 

Memory - variable depending what you are asking. Struggles to remember three keywords. If we

ask him to get something from another room he'll forget by the time he gets there or gets distracted along the way. Stugggles to replay to us what he's done during the day and not just down to expressive speech problems. often take shim 2 or 3 days to process info before he tells us. Remarkable memory though for numbers and recently letters. I showed him how to type 'Baby Bach' (current favourite video) on the PC the other night just once and he can now type it himself without me prompting him. Seems to remember odd details like the colour slide he went on on holiday 6 months ago.

 

Have they been addressed ? After a 6 month wait we got a triage OT assessment in January, the outcome of which was he needs a more indepth OT assessment and we are still on the waiting list. OT we saw seemed more interested in treating any dyspraxia (which is now less of a concern) rather than sensory issues.

 

Is there anything we can do at home ourselves to help him with this? Do try to do some brain gym exercises when I remember.

 

Edited to say: You know those mirrors you get at funfairs which distort your body so part of it looks disproportionately big and part looks smaller. That's what I imagine life must be like for my son with some hypersensitivity and some hyposensitivity. Must make the world a very confusing place for him at times

 

Lx

Edited April 8, 2006 by LizK

[jayjay]

Hi Ian, our sons issues are:-

 

Vision - has to wear glasses as he has a lazy eye, but not sure about what he sees with faces as he has speech problems so dont know if he would tell us. he does reacognise faces i think.

 

Hearing - is fine as long as the noise isnt to loud for example, loves discos when we first go in as it is not as loud but as soon as the music is turned up he starts crying and puts his hands over his ears and says it hurts him and gives him a headache.

 

Balance and Coordination - His core stablility is fine one side and off the other (occ therapy told us on wonk), pen control is very young he is 6 next month, he is double jointed, and his fine and gross motor skills are very low on the percentile. he loves being spun around aswell though and on fair ground rides he will constantly go on the ones that go round and round all the time

 

Touch - fine if in good mood

 

Taste - eats most things but doesnt like sauces on dinners at all.

 

Speech - with a speech therapist as his speech is behind at present.

 

Memory - short term memory is not good but long term memory is excellent does not forget a thing.

Thanks, i am going to a talk of yours in Bedfordshire next month so hopefully can talk some more.

jayne xx

Edited April 8, 2006 by jayjay

[oracle]

I know that my two have problems with all five of their senses and none of these issues have ever been addressed in our Authority. I am told that very soon we will have our very own Sensory OT - and I would imagine that they will arrive to a 5 year waiting list .

 

I also believe that we are what we eat and what we can and does impact on our intrenal chemical balancing act.

 

Instead of using my sons here I am now going to state why I personally believe that food and sensory input really can reek havoc with your system.

 

Three years ago I began to have the most odd and unexplained symptoms - they are still to a greater extent unexplained. I began to have periods on numbness in my arms , legs, bottom, neck, lips - well you get the picture. At the same time I was after eating experiencing a very strange feeling in my head. My brain would jerk and I would feel off balance and dizzy. It got to the point that I no longer wanted to eat but if I did not then I felt sick. I have periods when I can't sit still and periods when I feel as if my brain actually has cotton wool inside of it. I find it hard to think straight. In fact most of what I describe my two ASD sons can undersand and identify with!

 

For three years all of this has gradually got worse and although the medics are no nearer to actually giving this a collective name, they ruled out Thyroid problems ish - well I have them but they don't make you feel like this. I have now worked out for myself that eating certain foods at certain times of the days can make me feel ill and result in my head feeling very strange and my limbs jerking. I feel it happen in my head, which they all find very worrying, but never the less I can feel it all take place in my head. I have a temporary dx of Myoclonic Jerks - wonderful - and I am awaiting a scan but because I don't want to have the flashing light experience they are not happy with me at all. However after Ian did our Conference in Sunderland I now know for sure that my visual perception is also pretty screwed to put it mildly. I saw words jumping about all over his projection screen that no one else could and I was the only one of 100 people who was sitting watching an audience who all had deep purple faces after one of his little experiments. There is no way I am having the flashing lights now! I know that whatever is wrong with me is linked to my diet and also my sensory issues and probably my hormones (chemicals again) - but so far I have not found a medic who even wants to listen to me never mind try and understand. They are all playing pass t he parcel with me at the moment.

 

So what hope is there for our ASD children here? I think that we need to go back to square one here and start again and look at things from a totally different angle. As well as ASD my two both have multiple sensory issues and Allergies - so do I. In my opinion they all link up in some way to the ASD that my sons present with. Allergies are a chemical reaction or imbalance are they not?

 

I wish I had the answers now because I know how difficult their lives are - and even more so during the last three years while I have been having my strange symptoms which also appear to linked to sensory issues and diet - resulting in a strange chemical reaction from within.

 

Confused? I am

 

Carole

Edited April 8, 2006 by carole

[Zemanski]

I was just thinking about the idea that OT is the source of most therapy for sensory issues and therefore, if sensory issues are at the root of autism, may become the main source of therapy for all autistic children and it worries me a bit because there aren't enough to go around now.

 

Also OT can address auditory, proprioceptor, motor, tactile problems etc. but it doesn't address all the senses - OTs don't know much about visual processing or taste for example and visual perception seems to be particularly different in autism, along with auditory processing.

 

I think we need something more than just OT to address sensory issues - perhaps with this move towards specialist teams which include people like OTs for autism there is room for other experts to take a place, opticians, audiologists, dieticians?

 

The change of emphasis from the triad to sensory issues, or the inclusion of sensory issues in the diagnostic criteria would need a change of emphasis in assessment and diagnostic practice too.

 

'the square of impairments' doesn't have quite the same ring as the triad, does it?

How about the tetrad, or the quadrilateral?

 

Zemanski

[KarenT]

J doesn't have a dx but is suspected of having AS.

 

Vision - no problems.

 

Hearing - was tested recently and he was able to hear sounds on a much lower setting than the nurse usually used, so I guess he's sensitive to noise in that way.

 

Balance - doesn't seem to have a problem, he's quite agile. Osteopath noticed at first session that J walkes with toes turned in. He also fidgets with his fingers, wrapping them around each other while he talks or watches tv.

 

Touch - Not sure. Periodically he has a penchant for touching certain surfaces - different types of brick were interesting to him quite recently. Hugs very tight but hates it if it's done back to him, so I don't think it's a desire for pressure.

 

Taste - Has a very limited food range and that's after several years of hard work to get him this far (previously I cooked the same tea for four years). He eats very bland foods, mainly plain meat and veg, also eats in specific order and appearance (eg must have an even number of pieces of coloured pasta or will throw a wobbly). Won't have foods combined so no sandwiches (although he'll have buttered bread and crackers) or sauces, nothing should touch on the plate. Also smell - nauseous at certain food smells, will leave the kitchen if I'm cooking something that disagrees with him. Smells me too, but has realised that he shouldn't do it to other people. He's certainly improving in this area, but that's only because of the amount of effort we've put in to desensitising him to tastes and textures and helping him overcome his fear of new foods.

 

Speech - Very advanced for his age (he's 7) but no problems otherwise, just a rather endearing lisp.

 

Biochemistry - have just had urine screening done at Sunderland ARU and although he had the right peak to indicate he'd benefit from GF diet he also had an additional one which the ARU couldn't explain. I've got another pack to do a second sample and see if the rogue peak is still there. He also takes a fish oil supplement and this had a huge positive impact on him when he first started, but the effects lessened over time. I generally avoid additives like the plague so no blue sweets or pop around here - in fact J doesn't like sweets, only chocolate, and that not very often. I bake my own cake and biscuits to avoid all the nasties in shop-bought products. He's also very sensitive to chlorinated water and invariably has a stomach upset after swimming, sometimes inducing liquid diarrhoea but always with very strong and chemical-smelling wind. He frequently complains of a sore tummy too.

 

Memory - Short term seems problematic, he'll forget instructions by the time he's got to the top of the stairs but like many others can remember details of conversations and events that happened years ago. I think it partly relates to his level of interest and also to whatever else might be distracting him at the time. He'll also tell jokes etc several times over, seemingly forgetting that he's already told them, although that could also be a Theory Of Mind issue.

 

All of these things are more noticeable and intense when he's over-emotional. Lately he's been doing well because he's so much more relaxed at school and home so they're much less severe just now.

 

Karen

x

[Suze]

Hi Ian.........really interesting topic.We are curenty filing in the Olga....sensory thingy fot the autism specialist.My son has also had 2 ,3mnth OT sessions of integration therapy.He has visual problems..........dislikes bright lights........uses overlays.He has an auditory processing disorder.Left ear is dominant. He has a huge aversion to certain smells and tastes.The only thing we don,t notice too much now is touch........he used to hate having his haircut etc but has got better.He hugs very tightly and likes certain clothes.

[sue1957]

Should a campaign be instigated to ensure ALL children have all their sensory symptoms treated.

 

The question is

 

Does your child have sensory problems and do they impact significantly on their lives - and have they been addressed properly by the system.

 

A brief check list

Vision, hearing, balance, coordination, touch, taste, swallowing, speech, biochemistry, memory

 

Comments would be appreciated

 

My son did have, doesn't seem to now, and no we avoided the system, because there just didn't seem to be the right help available at the time. The problems did impact significantly on his life (light sensitivity, hated bright colours, hated going outside (probably because of light sensitivity), speech problems, food phobia, gut problems, "couch potato syndrome" (for want of a better expression, balance, co-ordination problems, lack of energy etc).

 

His light sensitivity and colour sensing problems were caused by fluoride in toothpaste. Don't know how rare it is, but in his case once fluoride was removed, his biochemistry has been adjusting itself naturally with a little nutritional help and removing all the chemical stressors we can. A lot of his sensory and physical problems just gradually went away. His light sensitivity went within days of changing toothpaste, he started coping with colours, it changed the clothes he picked to wear, he stopped only eating whiteish foods, so his diet improved, he started using the settee as a trampoline (we gave him a rebounder to use). He used it for ages each day, and then when he had caught up physically, he went to using it sometimes. His speech has taken the longest to recover, and is one of our signals that he is getting stressed. We have to be careful about dehydration, he has a very poor sense of thirst, also we are careful about keeping his blood sugar levels even.

 

Fluoride is unlikely to be the only substance capable of causing the type of problems we have had, (although we have been lucky that this was the one major factor in our case, and my son is probably particularly sensitive) but if there was something that could be done to promote awareness of the dangers of some of the things we are being told is "safe" when it isn't...... and then have treatments for sensory problems as well..... Count me in!

[Flora]

Hi Ian.........really interesting topic.We are curenty filing in the Olga....sensory thingy fot the autism specialist.My son has also had 2 ,3mnth OT sessions of integration therapy.He has visual problems..........dislikes bright lights........uses overlays.He has an auditory processing disorder.Left ear is dominant. He has a huge aversion to certain smells and tastes.The only thing we don,t notice too much now is touch........he used to hate having his haircut etc but has got better.He hugs very tightly and likes certain clothes.

 

 

Suze, William had a left ear dominance and Luke had no dominance. They spent over a year having sound therapy (listening to a tailored CD every night) and they both now have the right ear dominance. There are a few types of sound therapy; the one they had was Johansen Sound Therapy. It is very cheap (about ?30 a cd) although not a quick fix, but very effective. There are other ones that act quicker but are far more expensive.

 

Ian,

 

Both of my boys have sensory issues and neither have been offered any sort of therapy on the NHS. Since having the Vision and sound therapy they have both seen significant improvements but still have problems which impact on their lives as obviously there is only so much that those therapies would address and only so far the therapy could correct them. I won't go into detail here because you will be seeing them soon. But in answer to your question, their sensory problems have not been addressed by the system at all.

 

Lauren

[LizK]

'the square of impairments' doesn't have quite the same ring as the triad, does it?

How about the tetrad, or the quadrilateral?

 

LOL! The tetraology of autism maybe Though if the theory that sensory issues are part of the root cause am envisaging a triangle representing the triad with a little circle in the middle representing sensory issues!

 

 

Liz x

[Zemanski]

Good image

[oracle]

Brilliant idea because the little circle in the middle could be the focal point.

 

Carole

Edited April 9, 2006 by carole

[Flora]

LOL! The tetraology of autism maybe Though if the theory that sensory issues are part of the root cause am envisaging a triangle representing the triad with a little circle in the middle representing sensory issues!

Liz x

 

Wow, great idea

 

Lauren

[darky]

very interesting subject! i been keeping on about sensory processing problems in my daughter for over 2 years, and even before that her sensory seeking behaviour was highlighted and has never been delt with. finaly we are getting some apropiate ot to try and help with these issues, but not offered i had to fight for it.

 

auditory processing has caused us some of the biggest problems. with loud noises she covers her ears, jumps up lashes out, screams, and will do anything to avoid the sudden loud noise. this has lead to her becomming very phobic and she will avoid anywhere and anything where there is a possibility of loud noises. the issue has become so severe she is now on prozac to help with it. she seems to have problems with words she hears and will repeat them back wrong, such as saying ponolopy intead of monopoly or nibbles instead of nipples! lol.

 

vestibular: this again causes my daughter a lot of problems. she has loose gross muscle control and appears floppy with very low tone. she does not like to be up high and is contantly trying to ground herself in a seat. she hates being upside down. her motor skills both fine and gross are quite severly effected with her being on the first percentile for her age.

 

touch and taste: my daughter is very sensory seeking needing to touch absolutley everything. she constantly mouths objects and non food stuff. part of her "sensory seeking" involves ripping huge quantities of paper every single day and loves to be very messy and it dont seem to bother her about being in a complete mess including her face. she loves smearing. she also gets confused with hot and cold and will scream something is hot when in fact its cold. she seems to have sensitive touch with her making a huge fuss at a little scratch but not a whimper on something more serious. she constantly prefers to walk bare footed with removing shoes and socks at every oportunity. she was identified as having pica and investigated for an organic cause when she was 3yrs old. no organic cause was found.

 

she has been on fish oils high epa and dha for 4 months. shes on a additive free diet and eats plenty of fresh fruit and veg. fact is shes never eaten sweets and always had a good diet with plenty of home cooked food.

[jen]

The only two things which have really improved my childs problems are the advice from the SSS teachers and his weekly sessions with his sensory OT. Melatonin has helped to calm him down.

 

Some PCT purchase so many sensory OT sessions if they do not employ there own sensory OT. It is useful to write to the commission of your PCT to see if you can get some sessions organised for you.

Jen

[LKS]

My dd was given a very good programme by her Ot but it now seems as if they have passed the whole responsibility on to the school. Not sure if school always carry out the programme. (there's a surprise) apart from threading beads She was diagnosed as being over sensitive to vestiblar information and under sensitive to proprioceptive information. She is very sensitive to touch and different types of texture, her diet is poor and quite limited to bland tastes and textures, although sometimes unbelievably she will eat a curry. Her handwriting is large and poorly formed, often with no spaces and not on the lines, she does not read independently. DD is under an audiologist at gosh for auditory processing problems. she has only ever had one eye test which I was told was fine. I know her sensory problems affect her behaviour a great deal. I'm beginning to understand this, but not many others involved in her education seem to.

[tracey]

I too wonder if more help can be given to sensory issue

my daughter cant stand clothes, bedding etc if its uncomfortable

can be put off of going to certain places because of the smell

hearing almost bionic

had too stop going swimming as for ages afterwards she can feel the water swooshing in her ears

T

[LizK]

Brilliant idea because the little circle in the middle could be the focal point.

 

Might have to rethink that one as my DH tells me that's also the symbol for the Evil Eye

 

 

Liz x

[lil_me]

Does your child have sensory problems and do they impact significantly on their lives - and have they been addressed properly by the system.

 

A brief check list

Vision, hearing, balance, coordination, touch, taste, swallowing, speech, biochemistry, memory

 

Comments would be appreciated

 

Vision - Long sighted, stigmatism, squint. Has glasses they're now discussing surgery.

 

Hearing - I think thats selective but EXTREMELY sensitive to noise, has a massive impact on our lives, nothing done.

 

Balance and Coordination - Refused OT assessment as ASD isn't in their criteria. Both are a major issue for my son. One of the main triggers of self harm.

 

Touch - nothing done, another 'sensitive' area.

 

Taste/Swallowing - told he's a 'fussy' eater. Nope I disagree he's just that sensitive. Also struggles to use cutlery and if he thinks he can't eat it with his fingers he won't eat it. Nothing done.

 

Speech - Well he has seen a SALT twice since January 06, but he was refered when he was 15 months old and he's 7 years old now.

 

Memory - Fab long term. But he can't remember this morning. Never even been discussed.

[madmooch]

Hayden has major issues with Sight and sound and he doesn't like anyone touching his head.

 

Vision- good, but has a tendancy to stare at lights and switch them on & if i turn them off he will turn them on again.

 

Hearing- good, but will ignore you most of the time, only listens if i say Sweeties or Washing machine Sensitive to certain noises.

 

 

Balance & co-ordination- Balance very good ( like a mountain goat ) co-ordination bad.

 

Touch- he's very tactile and likes mouthing and licking things- whatever it is

 

Eating - will eat most things as long as they dont take much chewing- always eats with his hands.

 

Speech- echoalia and lots of words but no communication.

 

Memory- Good i think, hard to tell really as he's so young and non-verbal.

 

 

 

No help with any of the above apart from speech therapy which only consists of pushing PECS onto him which he doesn't like using.

 

 

 

Clare

[BusyLizzie100]

Yes, the sensory problems impact on my child's life hugely, and probably in more ways than I am aware.

 

Vision, hearing, balance, coordination, touch, taste, swallowing (only really sussed that one out recently - probably goes a long way to explaining his feeding problems at birth that left him so dehydrated his paed said he's never seen anything like it in this country), speech; don't know about biochemistry (although probably) and don't know about memory.

 

Are his problems addressed properly by the system? No!!!!!!!!!! The educational system seems to be the main (tempted to say one and only) way in which our children's issues are approached, but my argument is that a child with his level of sensory issues needs them to be properly addressed before he can even stand to be in a school environment and before learning can even be contemplated, yet it barely features in my son's Statement and there's certainly no OT provision made.

 

My son has roughly one course of OT a year (varies between four and six weeks), mainly of a sensory integrative nature, and only because I keep pushing for it. It does make a difference, then the OT says she'll discharge him but we can come back if there are any other problems, but of course there are continually problems... it's like trying to put a plaster on a chronic condition. The attitude is so dismissive. And the parents end up bearing the brunt of it all - we're all therapists in our own way, but the support system is non-existent.

 

And now shall I start on my other son??!! The same again - except that his sensory problems are so overlooked that he doesn't even have a Statement.

 

Yes, I'll back a campaign all the way.

[bid]

Hi Ian,

 

This is really interesting!

 

I think my son is affected in all the areas you mention apart from speech, although I'm not sure what you mean by biochemistry...would that be allergies and the immune system??

 

I've been referred to see if I may have AS too, and at first I thought that only a couple applied to me...but then when I really thought about it, I realised they all did apart from swallowing, taste and speech!

 

I also think that you tend to assume you are 'normal' about things because it's all you've ever known, IYKWIM...but this has really made me think about a lot of things

 

I would be really interested in what other adults here feel about themselves (with or without a dx).

 

Bid

[elun1]

Hi

This issue really interests me. My 4 yrold was diagnosed as moderate/severely autistic a couple of years ago and sensory issues are huge for him. He rocks and jumps, constantly (hyposensitive vestibular system,)visually stims with objects due to hyposensitivity, finds certain noises unbearable, I could go on and on! He clasically met the triad but virtually no mention has ever been made of his sensory issues and how they affect his perception of the world and his ability to learn. I've always found this so frustrating. I've tried (with no success) to find an OT with enough experience of sensory integration to help but there is no-one in our area or anywhere even close . ds goes to excellent autism unit but even they don't really seem to see that if some of his sensory issues were to be addressed he may be helped enormously. Has anyone else ever found an experienced OT? If so was therapy of any major help?

Thanks, Elun

[UltraMum]

I believe that virtually all children on the spectrum have some sensory problems but in each child some of the sensory systems may develop normally or in an inappropriate way. It seems logical that when a sensory system develops inappropriately, it should be treated not just ignored as "part of the syndrome" AS THEY ARE NOW! Should a campaign be instigated to ensure ALL children have all their sensory symptoms treated.

 

I wrote about this last year as part of my degree course - suggesting that the diagnostic criteria should be adjusted to recognise sensory issues:

 

Refinements of the diagnostic criteria over time by professionals have led to a focus mainly on the triad of impairments. The World Health Organisation (WHO 1992) diagnostic criteria for autism and Asperger syndrome (Shaw 2004/5) make no recognition or mention of sensory problems. This may be because the diagnostic criteria are derived from the outside, looking in at the 'disorder'. Compare this with diagnostic criteria for depression which include "a combination of emotional, cognitive, somatic and behavioral symptoms" which are described in the main by the patients themselves. (Sparknotes). This issue is highlighted by Lawson (2003, p11) when she states "to read a book that puts forward 'our case' as autistic individuals is still a rarity" rather than taking account of the experiences of autistic people themselves. This may be in part due to the lack of opportunities for autistic people to have an input into professional views in the past.

http://firstclass.ultraversity.net/~eve.th...e/ilm2/lit.html

I think that all children with sensory issues should have those recognised and either receive treatment or have 'reasonable adjustments' made to their environment. I know that many parents do this in their homes already.

 

The question is

 

Does your child have sensory problems and do they impact significantly on their lives - and have they been addressed properly by the system.

 

A brief check list

Vision, hearing, balance, coordination, touch, taste, swallowing, speech, biochemistry, memory

 

Vison - hypersensitive - very acute visual perception (age 13+ at 8 1/2) which compensates in other areas

problems in dark rooms etc where he cannot compensate by vision

 

Hearing - was tested for hearing problems many times!!! - most likely due to monotropism he does not 'hear' when concentrating on something else.

Hypersensitive to loud noises like sirens, heavy traffic, dentist drills etc

 

Balance - poor but has improved with lots of exercise

- caught out the OT when being assessed - performed well in the balance test until I pointed out he was using his reflection to balance - performed poorly when moved away from mirror!!

 

Co-ordination - gain poor but improving - cannot judge the speed of balls etc and also cannot judge how hard to throw etc (more proprioception I suppose!)

 

Touch - dislikes touch - will not submit to hugs - cannot judge the 'strength' of a touch a light touch can be sensed as a hard hit and vice versa (proprioception again I suppose)

 

Taste - - real problems with this one - hypersensitive - can tell one brand of hot dog from another!

 

Swallowing - and chewing - wont eat anything that requires much chewing - yet continually mouths objects and chews fingers (not nails - fingers till they bleed )

 

Speech - attended speech and language therapy from 4-6 years of age due to pronunciation problems

 

Biochemistry - haven't dared go there - not enough strength to cope at present

 

Memory - extremely poor short term but long term is of elephantine proportions!

[Olga]

I wrote about this last year as part of my degree course - suggesting that the diagnostic criteria should be adjusted to recognise sensory issues:

 

 

I think that all children with sensory issues should have those recognised and either receive treatment or have 'reasonable adjustments' made to their environment. I know that many parents do this in their homes already.

 

 

 

Vison - hypersensitive - very acute visual perception (age 13+ at 8 1/2) which compensates in other areas

problems in dark rooms etc where he cannot compensate by vision

 

Hearing - was tested for hearing problems many times!!! - most likely due to monotropism he does not 'hear' when concentrating on something else.

Hypersensitive to loud noises like sirens, heavy traffic, dentist drills etc

 

Balance - poor but has improved with lots of exercise

- caught out the OT when being assessed - performed well in the balance test until I pointed out he was using his reflection to balance - performed poorly when moved away from mirror!!

 

Co-ordination - gain poor but improving - cannot judge the speed of balls etc and also cannot judge how hard to throw etc (more proprioception I suppose!)

 

Touch - dislikes touch - will not submit to hugs - cannot judge the 'strength' of a touch a light touch can be sensed as a hard hit and vice versa (proprioception again I suppose)

 

Taste - - real problems with this one - hypersensitive - can tell one brand of hot dog from another!

 

Swallowing - and chewing - wont eat anything that requires much chewing - yet continually mouths objects and chews fingers (not nails - fingers till they bleed )

 

Speech - attended speech and language therapy from 4-6 years of age due to pronunciation problems

 

Biochemistry - haven't dared go there - not enough strength to cope at present

 

Memory - extremely poor short term but long term is of elephantine proportions!

 

It's so refreshing to read all these posts!!! When I started my research on sensory perception in autism (17 years ago), I was ridiculed by some professionals - sensory issues are not included into the official definition (ie. the Triad), so what's the point researching them?

Edited April 17, 2006 by Olga

[lil_me]

Olga, welcome to the forum, I have just bought Sensory Perceptual Issues in Autism and Asperger Syndrome on Wendy Lawson's recommendation & I am finding it interesting already, look forward to hearing you speak at our summer conference this year.

Edited April 17, 2006 by lil_me

[Zemanski]

When, Where?

 

Zemanski

[Bullet]

DH and I have been lent a book called "More than Words" to help with Ds1 and they have a sensory checklist. Reading it through helped me to understand he seems to be undersensitive to a lot of things.

 

Movement - constantly moving, loves rough and tumble games, loves spinning.

Touch - loves big hugs, wraps himself up in blankets, likes to lie down, bumps into people and when we walk he presses his head against my hand. He actually seems to seek out different textures and will often run his hands along objects.

Sound - does not react when people talk a lot of the time (unless they really emphasise things), but does respond to music and sounds from some of his toys.

Sight - likes flicking light switches, opening and closing doors, lines things up.

Edited May 7, 2006 by Bullet

[Lisajb]

Hi Ian

 

This is Chris

 

Sound and smell - "Whats that noise?" or "Whats that smell?" long before anyone else is aware of noise/smell.

 

However, always seems to have TV/Ipod turned up really loud without it bothering him.

 

shortsighted.

 

Sensation - little things which I thought shouldn't bother him (like scratches or bumps) did bother him a lot, but would get splinters and leave the things in his skin until they'd gone nasty and septic (and said he hadn't noticed)

 

Touch - hated it a few years ago, wouldn't be hugged, now quite touchy feely, will give and receive hugs. However still runs a mile when he sees me approaching as ne knows I'm about to check if his ears are clean!

 

L