Implications of an ASD diagnosis

[littlemiss19]

Hi everyone,

Just come back from an appointment with a Speech and Language Therapist who has suggested my 3 year old son is tested for Autism as he is slow in some areas of development. On reflection, I was quite negative about his development and according to my husband (who is his primary carer) inaccurate in some areas.
The assessment has come as a shock and we are not really ready for this.

What are the implications if he is tested positive - do we need to admit this diagnosis to everyone (schools, medical insurance etc).

Can we delay this kind of assessment until we are ready to process this information?

Many thanks in advance,

Waiting lists for autism assessments can be up to three years so you’ll likely have plenty of time to get your head around it.

If your DS is autistic, then a diagnosis will be useful to access appropriate support. You don’t have to tell the school, but I don’t know why you wouldn’t.

I agree with noblegiraffe. I would get it kicked off while you read/learn more, and you can always withdraw later if you change your mind. It's bound to be at least a year, and probably longer, until you would realistically actually have a Dx.

My daughter was diagnosed at around 4, but now (in Year 1) goes to a mainstream (small) school without any need for 1 to 1, has friends, is doing well academically, etc. So you could say "well what was the point of getting a Dx?" But actually, school do already make a few accommodations that make school less stressful for her (not making her be class rep or anything else where she'd have to stand up in assembly, letting her use ear defenders for noisy activities, turning off the hand dryers in the bathroom) which she probably could have managed without, but definitely help her and give her more energy to learn and play with friends and do the things that actually matter. Also, for autistic kids without other learning differences it is often teenage years when the wheels come off - and it can save a lot of pain and heartache trying to figure out what is going on and get the right supports if you already have a Dx in place. If he never needs it, great. But if he does it's there.

I think without the knowledge she is autistic there would have been much more expectation on her to "just fit in" - regardless of how much that cost her (or us, when we're dealing with an exhausted girl at bedtime!)

I have been asked about diagnosis by schools (though I don't know what they could have done if I'd omitted the information/said it was private). I've never been asked by anybody else so far. I know you can definitely e.g. join the Police if you're autistic (there is an Autistic Police twitter account). I think there can be issues with emigration (I think I read somewhere that Canada has a higher points requirement for immigrants with disabilities, for example) - but to us the priority was trying to get DD through school with her self-esteem/confidence as high as possible, and we'll deal with anything else later!

As a mum of a child with asd, just diagnosed this year. I would say don't put this off.

We have known for years that there was something 'different' since he was 3 because nursery presented a big problem for him coping. We have fought and fought for help and can honestly say until he has been diagnosed we have been getting nothing.

My ds struggles greatly in social and unstructured situations for example play times. I know it can take some time to get your head around it but for support for the future please don't put it off!

The assessment has come as a shock and we are not really ready for this.

normal to feel like this but it reads as if you want to delay diagnosis as you don't feel ready for it. It's about your DS, not you. And the waiting lists for assements are 1-2 years in many areas. I would not postpone.

If the doctors would suggest that you DS may have diabetes, would you react the same way (clearly, you would not wish to have your child diabetes either but I doubt you would refuse further tests and treatment)

also, at this point, an assessment was suggested. Nobody will diagnose him with ASD if he doesn't meet the diagnostic threshold.

Implications of a diagnosis - easier to access help and support. I theory, help is given based on need but in reality, a diagnosis can make it much easier to access help esp if he were to need extra support at school.

I cannot think of a negative implication.

DD has severe autism and I only tell on a need to know basis.

Thanks everyone for your words of kindness, support and for sharing your experiences. I literately wrote the message within a few hours of the SALT appointment and was in shock.

We will of course follow through with the recommendations.

Good luck to you all.

I know it's a bit of a shock but thank your lucky stars you've got a clued up SLT. We knew our son was autistic when he was 3. It was nearly five years before anybody took our concerns seriously and that was only after a SLT had been working with him continuously and noticed the issues we had been raising for so long.

And if you do get a diagnosis, don't hide it away. Use it to get the right school for him where they understand autism and will put in the right support.

Unfortunately there are too many schools out there who just expect children with autism to fit in, with disastrous consequences. Some of the sad threads on the SEN boards are testimony to that.

It is a huge shock - especially given that most of us coming into this world will have very false understanding of what autism is. Give yourself time! Luckily the speed with which assessments move means you will likely get lots of time to get up to speed etc.

If you want more "hands on" support there are some good groups out there (and some terrible ones!) One that I like is "Nurturing Neurodiversity". Maybe check out her YouTube and if anything resonates or is helpful she has a FaceBook group which has a lot of parents pre-diagnosis that you could join. Her son is pre-verbal but I found a lot to identify with and a lot of useful stuff even though my DD is highly verbal, like your DS.

Ds had speech therapy at two, I really wish his therapist had suggested to us that he should be assessed for ASD. Instead it was another 13 years before he got a diagnosis and plenty of damage was done in the intervening years.

Like others have said it's a slow process it won't feel too rushed. Good luck with it all.