ASD Paed app in 3 weeks and getting increasingly nervous

[howliscream]

I've posted previously as had had suspicions for a while about DS's behaviour and possible ASD. I now have a paed app in 3 weeks which I'm pleased about as I'm one of those people that would rather find out and deal with whatever may come as soon as possible but I'm getting more and more nervous.

Initially DH was a bit defensive about ASD (he later admitted to me that he was worried about DS being able to live a 'normal' life and what would happen when we're gone.) As we've been talking more and more about it these past few weeks, we are seeing more and more behaviours that point to ASD, so much so that we've more or less said that we are sure he is somewhere on the spectrum and it won't be a shock if the paed confirms this. The thing that concerns me is we keep saying that most of his issues are social (speech delay, socialising etc) and we're sure they'll get better but browsing through the SN board the other day, I saw some threads of people with much older children who are still non-verbal and it's given me a fright that maybe he might not ever speak

I know I'm getting ahead of myself here and I'm not really sure what I want anyone to say really, think I just needed to offload.

I guess I was taking my usual mindset to this which is "ok here's the challenge, what do we to resolve it" and I think I'm realising that maybe he might not improve and of course there is no magic cure.

I know I need to be positive and strong for my DS but I just keep looking at him and bursting into tears.

Can anyone talk some sense into me please?

He might never speak, it's true, but one thing that we do know is that more children with ASD speak than they ever did before and there is no critical time when they have had to achieved that by when you should give up.

Your ds WILL improve though, because if you know what the problems are you can work on the solutions. Don't expect it to arrive for the asking, some solutions will be hard to find and then hard to put in place, but if you are a 'doer' like you say you are then whatever you might feel or think, the prognosis for your ds is much better.

It will help you and the paed if you keep a log or diary of the behaviours and difficulties you have over these coming weeks.

1 in 20 still have profound difficulties when older. All of us improve.

Speech difficulties are now believed to be a different thing to autism, though, so autism can improve hugely but speech may not. Or speech may improve hugely but autism may not. Or they might both improve.

Not sure if that helps or not. The trouble is, even as adults we can struggle to use words wisely. Knowing what to say, when to say it, who to say it to, what not to say...those are social communication skills way different from "can child X say sentences". And most 'language' is non-verbal: eye contact, face expressions, gestures, how close you stand to someone, what tone of voice you use, etc. We are 'blind' to all of that, generally.

People with an ASD will always struggle with that social context in some way, but we can often find good ways round most of the challenges.

Does it mean we have awful lives and can't cope when our parents are gone? Nope, though that's true for some.

my son had autism confirmed yesterday,i thought i would only have feeling of relief but i still felt weepy even though i was wxpecting the diagnosis to be confirmed (it was his 3rd apppointment).my son does have language although none till 2 he now 3 yr 11mth and he lucky that he can give basic communication xx good luck hope all goes well xx

kerry, my ds and Natalie Janes ds are all 3 yrs 11 months with asd.

Thanks everyone. It's nice to have the support of people who know what it's like.

Stark - Thanks for the good advice. Am keeping a log of behaviours (seems to be getting longer and longer) As you say, once we know I can then focus on the right help/treatment.

amberlight - thanks for that. Very helpful to hear from someone with first hand knowledge.

kerry - sorry to hear about your ds. I imagine that is exactly how I will feel. Although you know it in your heart, you still hope against hope that you might be wrong.

Out of interest, are there any groups for parents and children with ASD? If DS is diagnosed, it would be great to meet with other parents and get some ideas about how to move forward.

Yup. Starting point is the National Autistic Society (easy to google) who have links to most autism charities, and most of those run some sort of parent and child support groups.