ASD diagnosis today I feel like my world has collapsed.

[Rafwife]

But why? I knew this was coming he is in school with a full time TA, back in full time nappies, can't feel pain and lots of other autisitc tendancies.

My eldest is also ASD. So why is it always such a crushing blow to hear what you knew was coming?

Is it just me? It's me first post here on the SEN board so I doubt any of you know me, just wanted to sound really.

Just can't stop crying yet I knew this was coming and it's not changed anything so why do I feel so shit.

Hello and welcome to MN

Like you I have an older one with ASD and then one with a regression with ASD and the dx hit me as it is you. It's a completely usual reaction, through my University I speak to lots of parents about their dx's and it's a really common reaction.

I'm sure you know from the first time but it's a form of bereavement and you have to take it day by day and let it sink in. Expect to cry, feel angry and cheated and let adjustment and acceptance take time. Expect steps backwards as well; I still do that years post DX.

Be gentle with yourself, and don't give up- ds3 will never be typical but he's doing far better than we ever thought he would.

because you wanted to be wrong.

I so very much wanted to be told about how ds1's issues were caused entirely by my appalling parenting, and was gutted to be told that my parenting was as good as it could be in the circumstances.

this is because you can change your parenting. you can improve your parenting.

there isn't much you can do to Autism, apart from the appropriate therapies - it's not ever going to go away,.

Look after yourself. I refused to deal with Ds1's diagnosis for 3 months, and focussed on Other things.

i needed headsp[ace, you might feel the same

Hello Ratwife and welcome to the SN board. Even if you are expecting a DX, having it officially confirmed is still often v. traumatising, seeing it in black and white is hard, be kind to yourself and give yourself time to get over the shock.

by the time dd1 was dx'ed, I knew she was ASD.

I had been pushing and pushing for a dx for nearly 2 years.

And i still walked out of the hospital, and cried all the way down the road.

it hits you hard, even when you know it is the truth.because, however much I knew that I was right, and dd1 had ASD, there was still a tiny little shred that was waiting for the doc to say "oh no, you're imagining it. there's no way your dd is autistic"

I assume you are a force's wife, from your username - is your dh around at the moment? or is there anyone in RL you can commiserate with?

take some time to absorb it, got any wine for later?

and welcome (although I wish, in the nicest possible way, that yuo weren't joining us over here). please do stay around.

Hi thanks all yes forces wife Raf hubby is here, well at the shops!

I am pregnant at the mo so hormones=disaster. Going to have a can or too of coke in a sec my naughty vice at the mo.

Glad it's not just me, I was hoping they'd say no you are a crap parent that's the issue rather than he is ASD ifyswim. It's still such a crushing blow to have someone tell you there is something wrong with your child.

DH has gone out to get me some coke zero, cake and chinese I am sure the MW will be delighted, I think he just wants me to eat tbh. He bottles things up, I don't so it was best he went out for supplies, I'd be a snivelling wreck right now tbh.

But luckily him being RAF we will get a lot more support with his statement, school etc and time of for appts, so guess we will sit down and chat about it the weekend, I told him I need time just to let it sink ifyswim and have silent support for now.

Hi. It's hard to hear, you desperately wanted to be wrong.

Take some time to come to terms with it. No one expects you to be supermum.

It's hideous. Cry if you need to.

Stick around here because you need the support. It's also invaluable for info.

((hugs))

For me it was the confirmation given by a professional, someone who knows ASD.

Its awful and it does take a while to sink in, but I this board is the best place for you - I have recieved so much support

Hello and welcome.
We received an ASD diagnosis for our DS earlier this year. Although it was expected, it is still a blow.
Be kind to yourself and sending you a big hug.

Welcome to the SN boards RAFW.

Getting dx is hrd, even if you knew it was coming, because there is that one little last glimmer of hope in th back of your mind that you cling to hoping that you're wrong, that you're just a fussy parent and the doctors will set you straight.

My DS2 was dx in 2008 when he was 2 and I can still remember how I felt. It takes a (long) while for that feeling to go but it does go and it's replaced by other feelings, some good nd some not so good.

ut your child is still your child, their dx hasn't changed who they are, it's just a step in the right direction for getting them the help they will nd or the future.

Hope you enjoy your coke

Raf, what you are going through is normal.

I am still waiting for it to hit me. I know it will. DS was diagnosed in April and I have just steamed on ahead, all smiles, simply because I have been so consumed with getting him the support he needs at school that I have distracted myself from how I feel about his DX.

On the day he was diagnosed, my DH was the closest I have ever seen him to crying. He looked like he had been punched in the stomach. It was heartbreaking.

All normal. As time goes on, we learn to accept what we can't change, but it doesn't mean it doesn't hurt.

Good luck x

Hi, We like you expected an ASD DX but it was still so upsetting. We are still coming to terms with it all - DS was diagnosed in October '09. You do feel that the bottom has fallen out of your world. Having said that DS has made huge steps forward - his speech has really come on, he is partially potty trained and he has built really good relationships with the staff at Pre-School. Apparently, they are 'big' girls according to DS. He is noticing children but isn't sure how to interact!!

Have you investigated DLA and carers allowance? The health visitor helped us with the form. We also have support from a nursery nurse attached to HV - DS's behaviour is difficult and has sensory issues.

Rafwife (hugs). I was shattered when my son was diagnosed with autism. We had been on the diagnostic pathway for years and he was in a sn asd school - so I knew it was coming too - so the 'down' was totally unespected!! I think Colditz is right - because i hoped i was wrong - that there was an easier path. I think too that after such a long hard struggle - its like hitting a wall. We want to support our children and start along the diagnostic path to get the support and understanding for our children. But the struggle to get a diagnosis is so huge a hurdle that its hard to see beyond it. I felt a certain panic at the lost years and tried to do everything at once!
It will take time to adjust.
And my advice would be to be gentle on yourself and take your time.

Hi Rafwife, I'm sorry to hear your news. We got our dx a month ago and it is still sinking in... like many on here I have been distracting myself by steaming ahead with all the new arrangements, and like all of us I desperately wanted to be revealed as a neurotic delusional woman with crap parenting skills. As we drove to the centre where we finally got our dx (after seeing lots of other doctors who said they didn't think it was ASD), my dh said "if these experts say it isn't ASD will you finally drop it?". As bleak as it has been so far, having a dx for us has meant everyone is on the same page and fighting for what our ds needs, and the sooner that happens the better it is for our dc. Good luck x

yep allnormal. Poor DH just sat and sobbed when we were told, and we knew long before appointment.

Rafwife, i'm so sorry to hear about your son. I think what you are feeling however is normal.

Our 2.7 daughter is having her assessment (DISCO) the first 2 weeks of August and i'm still secretly hoping they will tell me i'm the most rubbish mother they've ever met and that there is nothing wrong with her, that's its all me and that I will be the one doing lots of sessions and therapies etc. But i'm also sort of prepared for a diagnosis. At least I think I am or I try to convince myself I am.

There is no way to prepare for this no matter how much you know it already is there? Am sending hugs xxx

Hi back again stayed away from this section for a day, you know. Things are looking up I guess it has started to sink in, it's the first day I have not randomly started crying yet, so it's a plus.

Whoever said about DLA etc, yes we very recently just got awarded this,very shocked for a 1st award 6 years high care and LRM from the off, I guess that was a pre warning to the level of care he needs is excessive, you just kind of gloss over it though.

He has more issues with the Autsim than DS1, but DS1 has more learning difficulties so it's a learning curve again I guess, just got incontinence supplies as he is nearly 6 and in full time nappies as he has regressed so these will help.

I guess it's all starting to come together like bits of a jigsaw. I feel a bit blergh after writing this now, but it's getting easier I feel.

This is a nice forum to be in, I will definately stick around as hubbies job etc can cause no amount of stress and it's hard at times!

i knew DS was different and probably ASD from the time he was 11 months old. we saw lots of people and had discussed it plenty over the years.
but the first time i saw it, offocially listed on a medical report it made me cry.

It's silly. but its normal.

Hi I too have a son with ASD and a daughter who regressed and has ASD too.
For me I took my dd's diagnosis on the chin but in actual fact I think I was shell shocked and in denial even though I knew from the minute she lost her skills it was autism.
Three years later when she had a bad time at school I fell apart and then I mourned the child I had wanted.
Now ds is 15 and dd is 7 and we cope and sometimes we even enjoy it
Be kind to yourself and take it easy whilst you come to terms with the dx, it takes time for it to sink in.

Because it hurts like hell - even when you know.

I have a ds with severe ASD and I try not to think too far ahead. Every child is different and will go at their own pace - ds does things we didn't think he would ever manage because they are things that he enjoys (like cooking - which takes patience and WWW wrestling ability on my part at times)

Be kind to yourself.

I found it hard because I felt my child had now been 'labelled' and confirmation from a professional is like its set in stone. Also I was so used to my sons ways, being my only child I just thought it was the normal ways of a child lol

The ASD i could sort of cope with it was the diagnosis of ADHD on top that got to me, i thought i was just going to the paed for ASD diagnosis and then she asked me if i knew anything about ADHD.

I was like you, felt like the world had ended and began to worry about the future. His childhood didnt worry me but i feared for him in adulthood and still do. Will he live a normal adult life.

But then thinking about it, everything I love about him, his quirky ways etc is due to the ASD and ADHD. Without these characteristics he wouldnt be the child that makes me laugh etc. Just take every day as it comes, and just focus on the lovely child you have.