Does an asd diagnosis help?

[feynman]

Hi folks, I just wanted some opinions. My son was seen by asd panel last July and whilst he ticked lots of boxes in most sections, they felt unsure about the obsessive/compulsive side of things. Consequently they decided to let him settle into school (he's 4 and started reception in September) and review him again this Spring.

I just wondered what peoples views were as to whether an asd diagnosis has helped or been a hindrance? In all honesty I am unsure as to whether he is. I've gone from feeling certain to uncertain and every thing else inbetween. He is certainly 'quirky' and I feel sure he's probably boderline. He has sensory processing issues, is dyspraxic and and has speech and language problems (delay and articulation disorder). I would not be surprised if he is eventually diagnosed as adhd and I've been told he may have apd, but is too young to diagnose for these.

I guess it could be other things looking like asd, or they just may make asd more likely. I should say I have a brother with asd who was not offically diagnosed until 19, despite my mum having rasied the question when he was younger. I think the main reason was that he was too social, albeit in an impaired way and it was over 20 years ago, so maybe our views on it have changed since then.

I see similar traits in my son but not so severe, for example he doesn't hand flap like my brother does but he does screw his face up in a bit of an odd way which I think may be some sort of tic/stim?

Anyway, I know he's very borderline in terms of getting a diagnosis and what I say may well make the difference. I know parents naturally want to play down their childs problems but I don't want to play them done and him not get a diagnosis if this is the wrong thing. Equally I don't want him to end up with an asd diagnosis if it will hinder him. For example I'm trying to get him into out speech and language unit and I know they hjave a policy of not accepting asd kids.

So have you found it helpful or not? I should say he already has a good statement with lots of provsion and salt and OT written in. I don't think an asd diagnosis will help him to get more provsion in school other than people may make judgements about him (not sure if this is good or bad), but I;m unsure whether there may be benfits that I'm not aware of.

Any views would be much approciated.

Thanks

Yes a diagnosis does help as it means you are less vulnerable to the changing winds of opinion when trying to access support of all kinds from social services to booking dental appointments or playschemes and clubs or charities.

My son doesn't have a diagnosis & suffers for it. I have wasted an inordinate amount of time fighting for help that had he had a diagnosis pre-school would have made our family life so much easier. Silly stuff like accessing a dentist that could handle him took forever & frankly it's time I'd rather spend on my child directly.

It takes 18 years to raise a child during which things can change so much so even if they have brilliant educational support today, who can say what the political structure of education will look like in 10 years. You may move to a less supportive LEA or your childs needs may escalate. It'll help you hang on to that statement.

I see a formal diagnosis as a form of insurance policy - especially with all the cuts and disability bashing we've seen in the media recently.

Once working as adult disclosure is totally down to the individual - unlike a wheelchair user those with invisabl disabilities can weigh up the benefits of dsclosure to employers against any potential risks. So you risk no long term harm to your child there.

A dx is very helpful.

They won't give him a dx just because you want one. They will only give him one if they genuinely think he does have ASD.

I don't think there is a single drawback to getting a dx.

Agree with other poster, no drawbacks but a dx will give you access to services - without a dx many services wont accept referrals and whilst it may not seem that important right now it may be in the future during teenage, early adulthood and adulthood and I always bang on about this but a dx also provides an explanation which, again, may not seem important in the here and now but may be when ds reaches teenage years and has more insight into his differences or differbilities as Wendy Lawson would say.

Thank you folks, I guess I probably knew that deep down, but needed to hear it. I realise they will only diagnose if they're are sure, which is good, but I know theres probably not a lot in it either way.

Ok next question. The section we were unsure about was the obsessive/compulsive side. I would class the way he plays with toys no more obsessive than most 4 year old, and he doesnt really play with things in a non functional way.

But he is pretty rigid in how he does things. For example, at tea time he will try an help to set the table. He likes to put the knifes and forks on the table. He always wants to get them out of the draw himself.

If you let him open the draw and get them, he's fine. If you get them and give them to him, he has a bit of a meltdown. If his sister does the knifes forks and you ask him to put out something else the same thing happens. It's like he has to do knifes/forks his way or he can't cope.

Also he has trouble if things don't go the way he expects them to. The other night I was supposed to pick him up from the childminders, but I was running late after an incident at work and my hubby had to pick him up. (Hubby picks him up other nights so this was not unusual).

As soon as he got home, he started having a tantrum that I hadn't picked him. He must have told me 20 times to take him back to the childminders so that I could pick him up. He told me I had to take in the next day (Saturday) so that I could collect him. It didn't matter how many times I told him it was Saturday and she was out, he just kept on and on. As soon as he woke up on Saturday morning he started the same thing and continued most of the morning.

I know these are only a couple of examples but I have come to realise that I largely modify his environment to prevent kick off's in the same way that I do for my brother, without even realising it.

Anyway is it possible to still be on the spectrum without the 'obsessional' aspect? He's certainly rigid in how things need to be and ticks most boxes in the social side of things and communication sections . Just wondered what your views were.

Thanks folks.

What you're describing all could be symptoms of ASD.

Very common to have OCD type stuff with ASD - OCD is just a symptom of anxiety, and kids with ASD have huge anxiety.

You don't need to have obsessions to have ASD.

I'd agree with Indigo. You don't need to have obsessions, but there is likely to be some rigidity. Knives and forks issue would fall into that as would the 'proper' person to pick him up, the person he expected.

My DS did have obsessions but they'd only last for a short time and he'd move on to something new, so they hardly seemed obsessional. He also manages most big changes without a fuss, such as holidays etc, but may get upset over small changes, like the PE equipment being set out differently. I have never been able to predict him!

Obsessions and compulsions is not one of the triads. Rigidity is, which can manifest itself in obsessions but doesn't have ti. It coukd be those things you described.

Dx does help in most cases but don't be fooled into thinking it is your ticket to privision and support. Think of it as your entrance ticket to a labyrinth/maze full of challenges which you'd have no chance of attempting without.

To follow on from StarlightMcKenzie a diagnosis of ASD is the recognition of the set of problems based on a triad of behavior observations.
What is not always apparent or even diagnosed are the multiple co-morbid issues which can combine to cause the observed behaviours.
It is a bit like a diagnosis of dyslexia, it highlights the problem but does not diagnose the cognitive subtypes or underlying causes.
So the next step after an ASD diagnosis is to identify the issues causing the ASD which needs to be done on an individual basis to identify the the specific disabilities and the varying degrees of severity. The individual disabilities which have so far been identified as possible individual elements of the multiple issues that are the underlying causes of ASD include ADHD, Specific Language Impairment (SLI) Scotopic Senitivity Syndrome (SSS), Sensory Processing Disorder (SPD), Pragmatic Language Impairment, and there could well be more as research increases the understanding of these inter - related and sometimes overlapping issues.