feeling lonely : asd parents/carers advice needed (yound son pos asd)

[mummytolucasandkatie]

My son is 3.5 and just been accepted to be referred for ASD assessment . these appointments have been long time coming about a year now to where we are (just being referred ) they said they saw enough evidence to warrant one .

Anyway I was the one that first suspected and nobody really accepted it now they do (family, dh)

Well at this stage in the game my hubby has just told me I'm obsessed and it consumes me I am deeply hurt and upset that he's just said this he is the only person I speak to about it .

I know I speak about it a lot but I need to, he says he sees it he doesn't need me speaking about it and to just enjoy our son =( he's right but I can't shake it not until the assessment is out the way anyway !

Did anyone else feel like this ??? =(

Thanks
Mummytol&k

yes I felt exactly the same as you! The only person I spoke to about my ds was my mum and she ended up saying I was neurotic. Our relationship went down hill from there.

I dont have a DH so no advice about what to say to him. All I can say is I totally understand how you are feeling. All I thought about was DS and was he wasnt he on the spectrum until I got his dx. Life is so much better since we received his dx, I feel like I can move forward.

Yes, it totally obsessed me at that age - why wouldnt it? If a child had been diagnosed with some medical lifelong ondition, no-one would be remotely surprised if it dominated your thoughts. So why not autism?

I bored friends and family rigid about autism for years, still do sometimes though less so nowadays.

Better to let it out though, healthier than burying head in sand, so DH will have to listen. DH is trying to project the problem onto you, rather than face it square on?

Things do get easier, promise.

We're awaiting assessment and in feel totally consumed with it all.

I'm aware I talk about it a lot but until I find out for sure I can think of nothing else.

Everything he does I scrutinise as a possible sign. I'm terrified we won't get a DX.

Totally consumes me also. Sounds like we're at the same stage as you. Ds is nearly 4 and waiting on assessment too. Keep gettin fobbed off as to where we are on the waiting list for psychologist. Terrified we won't get a diagnosis either and also terrified that we will get one.
Obsessed with it at this stage

D's has seen clinical psycol, who warranted the assessment . it does consume me and it sounds awful but I hope we get it he needs it , he ticks far to many boxes , I'm probably worrying about nothing because they are the experts !

I say things to him as he is hopeless and probably doesn't see the things I do so mention them and frequency so were on the same page .

Its so hard isn't it ?! Once a DX is out the way I'm sure I will be able to move on , my mum was supportive at first and still is a bit but sometimes she seems shut off to what I'm saying and says I should e joy him (which I do of course he is perfect)

I could talk all day about it but the only people that understand are those going or who have been through it xxx

Its a very stressful time. If i knew this time last year what was ahead for me i don't know what i would have done. I never want to go through.i this last year ever again.

Yes, it's all-consuming for me too (just had our community paed initial visit and waiting for assessment appointments for DS 3.5). DH and I are certain he has PDA and some sensory issues but I am terrified we won't get a diagnosis and DS won't get the support he needs when he starts school next year.

I'm on these boards lots just trying to understand my DS and his behaviour and picking up tips from others.

Whats annoying and taken so long is pead app we had to wait for that then got referred to children's centre to see a psycologist (muggins here assumed this was the autistic assessment) but she saw us 3/4 times and now referring for an ASD assessment waiting list is months !!!! Doesn't help "that" feeling =(

Glad I'm not alone xxx

You're certainly not alone. I literally look on here everyday & i can honestly say i couldn't of got through the last few months without it. My son has just been refered to OT for possible dyspraxia & is also waiting ASD assessment.

My DH was similar.
I think it's a common reaction. Makes it harder for the more-aware parent,
It does make it hard to just enjoy the preschool years I agree
I found getting diagnosis made him sit up and take notice

Yes I felt very much the same as you when my child was that age, the preschool years stuck on waiting lists are grim. This board was an absolute lifeline, the only chance to chat to people who really got it.

Let's face it men are the weaker sex!

I also found it very usual for people at that time to focus on ME (why am I so obsessed, anxious?) rather than the autism. Because making my anxiety the issue got them off the hook from the far, far harder issue to be faced: autism. Cowardice, really

yep, consumes me too, we have just been referred for ASD assessment too.

I also find I scrutinise everything he does, is that because of ASD? There are even the 'good times' where I question if it's all in my head.

I do accept my DS for who he is and love him to bits but there's a big part of me that feels a dx will explain why he's the way he is - more so show why he differs from his peers as opposed to changing him.