Has anyone had their child dx for sensory processing disorder?

[LynetteScavo]

Just that really.

We have an apt with CAHMS in January. DS1's (12) school suggested we ask for a referal from our GP. The school (well, head of year) is suggesting Aspergers.

I know think DS has sensory processing disorder and would like a diagnosis so I can shove it it the schools face and they won't just think I'm being precious so they can better understand him and put appropriate support in place.

My other thread is here if you are interested

Just wondering what the best way to obtain a diagnosis is. I have had a CAHMS psychologist smile sweetly at me and tell me "You'll never get a diagnosis" but that was 3.5 years ago.

I'm presuming I need to see a private OT. (?)

Are you saying that you dispute the idea of Aspergers and want a dx of SPD to prove it?

Yes I was going to ask that same question when I read this earlier :)
Because he can have both AS and SPD. SPD is another underlying issue of ASD.

I just read some of your other thread though to get more of a picture. I went to camhs and they didnt have a clue about SPD.

I have since seen an OT who has confirmed my DS has SPD as in sensory processing DIFFICULTIES and not disorder. Aparently they phrase it this way now........alledgedly.

I would go to a private OT if you can as the waiting lists are forever for an NHS one.

My ds has SPD but no dx. This is because the OT asked if I wanted one and I said no. I have my reasons but the main one us that SPD is nearly always a factor in children on the spectrum and having ASD kind of assumes SPD just as it assumes language difficulties i.e social interaction/communication, which is why I also refused a dx of specific language disorder when it was offered.

The thing about ASD is that it isn't a thing at all. It is a kind if mesh of things and whether or not you fit the criteria is based on your ability to provide evidence at assessment, your own knowledge, the quirks of the test, the biases of the paed, the weight they put on school's view and the usefulness of a dx to a child at that particular time and sadly, in some areas the 'quota'.

And believe me, a dx of Aspergers is more useful to your ds than a dx of poor parenting.

But to answer your question specifically, yes you'll need a private OT with a post grad qualification in Sensory integration.

In your position I would source some books on Aspergers that are written for children your ds' age and ask him what he thinks himself.

Sometimes I would like a dx for Aspergers (when DS is struggling at school) at others I think he cannot have Aspergers, and would never get a dx. (When he has had two weeks off school and is perfectly relaxed and happy)

I actually think he is on the spectrum, but so mild he will never get a diagnosis, and therefore will happily settle for a SPD dx. Sensory processing difficulties are far more tangible.

He is coping with life in most ways, just when he gets overwhelmed the school we have to know how to deal with it.

I am good at convincing people I'm not a poor parent, but I guess they just think I'm a fussy middle class mother.

I have decided not to go to the CAHMS apt, but to send just DH and DS, and will write my thoughts (for want of a better word) down for them.

LS, it's good you have a plan. Do weigh up the information you are given however. And the benefit of any intervention.

FYI pretty much all of us are convinced our children are on the mild end until we get a thorough ASD assessment and realise just how many coping strategies our ds' have developed not to mention the many compensating strategies that we have put in place for our children that are not 'normal' although they have become normal for us.

Having said that most of the 'symptoms' can often be sensory so if you can adress the causes you may well improve things for your ds. It can sometimes be better to adress the individual 'needs' rather than an overall dx as this stops people from making gross overgeneralisations about your dsx

Brilliant insight from starlight as usual.

Glad you came over here lynette, I have done some reading about sensory stuff because Dd3 struggles so much with it and yet it doesn't appear in any big way in alot of the info about ASD.

I am convinced her sensory issues are tied up with her ASD, things are too bright, too scratchy, too smelly etc.

School is a very difficult place to be with all that going on and then there are the subtleties of language that she doesn't understand and the teacher who suddenly decides to do PE instead of ICT [Dd3's worst nightmare].

I suppose what I am trying to say is that there is lot more to Aspergers/ASD than we sometimes realise and I think again Starlight was right when she said that we compensate without even thinking about it at home just to get through the day without meltdowns.

Have you read Tony Attwoods Complete guide to aspergers? It is a really good book, I would recommend it.

Take care and good luck with the appointment.

I agree with everyone else.

I think all children with ASD have SPD. And I would only settle for a dx of SPD if I couldn't get a dx of ASD.

Is he being assessed for ASD? The only way to know if you can get a dx is to try......

I would expect nothing fom CAMHS and something fom a private OT.

Agree with what is said above.

I was told by Autism Outreach that the current thinking is that SPD is part of ASD. At the Challenging Behvaiour and ASD course, we were told that a lot of the behaviour presented by ASD children are caused by SPD.

Ds, who has ASD, was dx with SPD a year ago by the nhs OT. In our case, it was very helpful - it enabled us to move school as he just could not cope with the huge classrooms etc. It also meant that while he was in his previous school, he could take movement breaks every half hour etc. His TA used to take him out for physical de-stressing activities on the small trampoline, kicking the ball against the wall, hitting the ball with tennis racket etc. Of course it singled out ds as unusual but he was already singled out. The TA also worked on joint compression and other such esercised with him. This was only possible because he had a statement with allocated number of TA hours.

It was a long wait for the initial assessment by the nhs OT. Also, school only put in the programme because it was very strongly recommended by the OT and because ds was by that time displaying very challenging behaviour - hitting, kicking, shouting in class etc. I believe that the challenging behviour stopped within a couple of months had quite a lot to do with the programme put in by the OT.

Thanks to everyone who has replied. I haven't disappeared, I am reading and re-reading everyone's posts.

I have a DS aged 6 who has dx (so far) of SPD and dyspraxia. However once I had these dx, I realised that they didn't answer all of the issues and definitely didn't explain some of the behaviours that we hadn't be able to stop even with a grandmother who was a primary school teacher who dealt with a huge number of SN children.

The main thing for me is that for DS once he gets older those DX will not answer why he is why he is. Why everyone else just seems to "get" the social stuff and he doesn't, why he is just that bit different than others and why he doesn't fit in :( However if I can get him the DX that I feel that he fits, i.e. Aspergers, it will help him to understand himself and for others to be able to understand from the "label" why he is the way he is.

Our school can't get help from Autism Outreach without the dx and I worry about him not having whatever support he needs going into secondary school without a dx.

I hope that we can help you to decide what is right for you and your DS - whatever that might be - as only you know your child and how he is affected by all of this.

OK, have had a horrible, horrible past week since term started.

CAHMs apt is on Monday. I am going to ask for an ASD diagnosis.

DS no longer has an specific interest (used to be cars). He now has no interest in anything. So we won't get a dx, will we. He also does sarcasm pretty well.

He hates school. He hates home. Despite being bright he is unable to articulate why.

We had a lovely 2 weeks Christmas holiday. He actually let me hug him briefly.

Now he is moody and sulky and just grunts. He has done no homework this term and cries if we try to talk to him.

Lynette have pmed you

I have been doing a lot of reading lately, b/c of DS's problems at school. My understanding, is that although sensory processing can overlap with other disorders - aspergers being one of many (dyspraxia and ADHD being just another 2 others)....but a children can have a discreet diagnosis of just SPD.

I find some of the comments baffling , as ASD at its heart has to fit actually quite strict criteria - the main things being that is characterized by significant difficulties in social interaction, alongside restricted and repetitive patterns of behavior and interests. These are at the core of a diagnosis....so if a child does not exhibit these, then surely it can't be aspergers - so why would you want that "label"?

I was thinking about this today following a meeting with school. ASD is a complex, multifaceted issue. It spans difficulties with sensory processing, movement, social interaction, language, working memory/literacy, self regulation (bowel, bladder, sleep/wake, attention). As such, a child on the spectrum can meet the criteria for other conditions e.g. Dyspraxia, dyslexia, SPD.

The difference is that there is no exact picture that fits every person with ASD. As someone else said on MN- when you have met one person with ASD, you have met one person with ASD.

The picture changes from day-to-day. And if you are assessing a child with relation to school; then other factors should be considered by a competent professional e.g. is it the start or end of term (tiredness), is the child compliant at school but unravels once home (good insight as to where greatest demand is), is today a school track suit or gym day (might prefer to wear shirt and tie, or might not, might prefer gym, might not).

OP there has been some great advice and insight from others here. I would echo whoever said about keeping a diary; note activities, what allowances you made, what warning you give about activities, how he reacts to unflagged schedule changes, mood before/after school. I feel that parents underestimate the level of support/adaptation they provide for the higher functioning ASD and this becomes 'invisible' even though your child would fall apart without it. And that could make or break your case for diagnosis.
For me having that label has been useful- though I have emphasised to school that on no terms is it to be used in public. Labels are easy to apply- very hard to remove.

My DS(7) has some sensory issues but all we got was an OT referral with no mention of there being anything to diagnose. Personally, I think he has SPD (and the more I watch hinm the more I see AS, but that's another story....), but pead just told us that's how he is, use OT suggestions. That's it.....

Watching this thread with great interest.

HI all, I am new to this site, and so glad to see such support.
I live in Nairobi, and left UK when my 8 year old was 4 months. We have recently had him "dx" with SPD (we would have to go back to UK for proper dx as your references - and last attempt to see an OT without being resident was a disaster and long winded!). I was interested in some of the comments out there "obsessive with trains" and other comments made by imogengladheart. Symtoms seem so like my 8year old son. he is obsessed with trucks / diggers and will spend hours a day playing in the sandpit/flower beds with his trucks and diggers - to the point now that I feel that is his "down time" and when he escapes the world, so to speak. we dont discourage it now. He struggles with his peers at school, as is unable to relate (be involved in their games, initiate games) so as a consequence he used to do "naughty" things to get their attention, in turn getting into trouble for it and becoming more isolated and "mis-understood". He has now learnt not to do silly things and his latest tact (when peers dont play him/let him join in) is to say hurtful things (things that an 8 year old would know plainly is hurtful and not nice). DOes anyone out there have experience of this? Ideas? We are working with an OT here, but dont have the specialist care / range of care that you do in the UK.. even if NHS is a little slow.. you are very lucky to have it.! Thanks all.

Outofafrica try and find a behavioral / aba therapist who will come and see you. You'll have to pay their air fare so you might want to club together with some other families.
A good aba consultant would help him develop more appropriate social overtures.

Hi Lynette, my DS(6) is going through the Aspergers diagnosis process. His OT has found issues with 5 of the 7 senses but I don't know much detail yet. However, my OT recommended Winnie Dunn's book Living Sensationally: Understanding your senses and I also bought the Out of Sync Child.

The problem I have in learning what works for my child, is that there is many facets so some of the issues aren't relevant. It depends on how your child reacts to things eg seeking sensory or too sensitive.