ASD - but where on the spectrum

[Justgotdiagnosis]

So after 2 years uncertainty we know it is ASD

But it still leaves so much uncertainty
As there is no indication of where on the spectrum

I just don't get it. I can't see what the future holds and that's what is making adjusting to this even harder.

I'm not comparing this to cancer (forgive me in advance if this causes offence, I'm probably not thinking very straight) but the nearest thing I can think of is if you were told you has cancer but no one told you where it was, what to do about it and what the likely outcome was.

pls list your childs concerns and issues/behaviour. that may help figure out where he is on the spectrum

3 years 9 months
Language delayed but progressing - but now they think rate of progress so slow it is a disorder

Findings in clinic with a person new to him were: echolalia, not referencing back when looking at an object, funny tone to how he speaks
Lack pretend play
Reduced non verbal communication
Reduced asking for help
[Can seem very different with people who he knows]

Also
Difficulties in making friends at nursery
Low tone and hypermobility, improving with swimming though
Flapping

He can read 3 letter words
Loves music

He does do some pretend play but they think it is acting out same scenes, also speech, although sentences, it is often sequences

Even if they could point to a spot on the spectrum and say 'here! Your DS is here!', it honestly wouldn't make any difference. Every single child on the spectrum is different. And what's important is getting them the tailored support they need.

But I too waited 2 years for a dx, and I thought the dx would solve everything. It doesn't. It's just the start of the journey. I know thats probably hard to hear though. Just give yourself time to process that there is a dx, and you can move on from there. Eventually. ((hugs)).

I just wanted to eco the wise words from Wilson we are 3 years into diagnosis and things have changed so much since that time and will change in the future. Where I feel he is on the spectrum has changed over the years.

When he was first diagnosed I felt the future was very bleak but I have had good support some of which I have built myself going to support groups. It's so good to know you're not alone.

He is doing things now I never thought were possible. Believe in him and support him everyway you can.

Good luck x

Different children will have different strengths and different weaknesses. As time goes by they also change - they grow and learn to adjust to some situations, but others can become harder for them to deal with too. Try not to get to fixed on the "future result" at this stage - even a NT child can not be predicted as to how well they will do at school, what career path they will take, some are slow starters, others fly early then plateau. Focus instead on what support he will need to manage his stress in school and to support his learning to the best of his ability. Does he need specialist education or will he cope in mainstream with proper support in place? Have you started to look at statementing for him for school to ensure that support is there? It is a long ongoing and often frustrating process to work with the people to get things right. Come and post for help in these processes and try to enjoy your son for who he is right now in the meantime. Also be kind to yourself, it is a big shock to hear the answers even if you knew in your heart that would be the outcome.

I agree with Wilson. Personally I find the concept of a spectrum fairly unhelpful. Your DS is the exact same age as my DS was when he was diagnosed and he sounds very very similar.

We are two years down the road now and he is a very different child in so many ways. All you can do is focus on his individual needs and make sure everyone involved is doing there job. Try not to focus to far ahead, but every now and again it helps to look back because you will see how far you have come.

Thank you all, you have all made a real difference to how I am feeling. Thank you for helping it all to look less bleak.

Hi my ds1 5 years asd dx at 3 years old still no one knows where he is on the spectrum!! I know it's hard!! For me it was that everyone I meet with asd kids was told where there kids was on the spectrum and every time I askt was just told we don't know!! But be strong!!!