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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Autism diagnosis, why do I feel so sad??

18 replies

Calally · 02/11/2011 19:35

Ive known for awhile that ds (6) is autistic. Finally got an assessment. Paed and everyone involved agreed he was autistic. Had his assessment today, and its been confirmed that he is autistic. It's confirmed what I already knew, but I just feel so sad, and have cried all afternoon. I didn't think it would be bothered this much. Has anyone else experienced this?

OP posts:

keepingupwiththejoneses · 02/11/2011 19:39

I did exactly the same. I had 'known' for over a year before we got official dx so was well prepared. When I got home I just burst into tears and sorry to say was like this for a few days after. I think it was the fact it was now final and there was going back IYKWIM. Hope you feel better soon.

5inthebed · 02/11/2011 19:42

I experienced exactly that. it is very common.

There was probably a tiny piece of you that wantd them to say he has nothing wrong with him, a tiny part of you that wanted everyone to say you are a paranoid parent.

The next year or so you will feel like this, it took me about 18 months. You are grieving for the child you thought you had, the childhood you have lost. But the truth is that he is the same child, the same boy you have raised for 6 lovely years, he just has a different path to follow now.

to you, be kind to yourself.

unfitmother · 02/11/2011 19:49

Your reaction is very normal. I did just the same even though DS was 11 when he was officially diagnosed and we'd known for years.
Allow yourself time to adjust.

MangoMonster · 02/11/2011 19:50

Had the same reaction myself, it's quite common, so don't feel bad. You need to take time and get your head around the dx. I found I felt better once I started implementing things to help DS. HTH

Original poster

Calally · 02/11/2011 19:51

Thank you all. Ive spoken to a few friends, who don't seem to understand. They all said, they haven't told you anything you didn't already know. Hard to explain. But helps knowing others have experienced the same thing

OP posts:

StarlightMcKenzie · 02/11/2011 19:52

A slap in the face doesn't hurt less because you were expecting it.

This is the worst bit. Spend time on yourself and work hard to adjust.

So sorry.

amberlight · 02/11/2011 19:52

Calally, heck and drat. As 5 says, be kind to yourself. It's shock.

Me, I'm autistic. Not at the mild end, either. And I'm a mum and wife and have a small business and lovely friends. I know plenty of others on the autism spectrum with the same sorts of outcomes too. Was it hard work? You bet it was. But worth it.

Whatever fears you have for your child's future, don't despair. Many of us learn to find ways round the obstacle course and make it to happiness. Maybe not with a full set of independent living skills ( I can't live alone) but with much that fills life with joy all the same.

But for now, have a and talk to the lovely mums on here about things and let us support you and cheer you through the future

coff33pot · 02/11/2011 21:03

I am still on that path but dont doubt I will feel the same way, every letter gets me going. Its all natural. Big hugs to you xxx

dev9aug · 02/11/2011 21:34

I felt sad today for the first time while ds was laying next to me in the afternoon. Ds(2) not officially dx yet, possibly autism, only picked it up 4/5 months ago. I am determined to make sure he gets the best care we can provide, but part of me keeps wishing hat it will go away, call it denial if you will, so completely natural for you to be feeling that way...

MangoMonster · 02/11/2011 21:44

dev I still have denial phases, agree it's completely natural.

Grey24 · 02/11/2011 21:45

I'm awaiting a meeting in a few weeks where I gather they will v likely diagnose my DD (2) with ASD. If they do, it will be a relief in one way (I haven't been 'imagining it' and we can get help for her) but I suspect I will also feel very disorientated and odd and very sad. From what I have read people say on here before, even when you are expecting it, it is still a shock. I'm sorry not to have words of advice, only that it sounds 'normal' though horrible. I suspect I will feel the same in a few weeks....

sazza76 · 02/11/2011 22:20

Completely understand, I have known myself for a long time that my son (3) is Autistic, and thought I had come to terms with it. Booked GP appointment, thinking right I just need to get him diagnosed so we can get some help for him, get a nursery sorted etc. Walked in the door of the Dr..............burst into tears and couldn't speak!
Gve yourself some time, like others have said, its a grieving process to really come to terms with it.
Amberlight, I very much appreciate your post, not often I have heard from any Autistic adults, everything you read is about children. It really did make me smile to read your post, thank you.

amberlight · 03/11/2011 07:50

Sazza, ther's a few of us on here as mums who might have something useful to say once in a while. I'm also an autism adviser, but not here as any sort of expert of course.
all round for those waiting for a diagnosis or coming to terms with one.

ArthurPewty · 03/11/2011 09:29

This reply has been deleted

Message withdrawn at poster's request.

zamzamzam · 03/11/2011 09:34

I felt the same when my son was diagnosed. He'd been in the assessment process for a year & it wasn't a surprise but it was horrendous. They were all so negative & unhelpful and I really felt (still do) that they were writing him off & wanted us to accept that he would have a pretty shit life.

He's made a lot of progress since then, that we've driven there's no one falling over themselves to do anything; but is still so 'behind' & I'm in a constant state of anxiety waiting for the next problem.

ilovesprouts · 03/11/2011 10:38

i have not got a frim dx yet just gdd so in still wating to find out :(

Original poster

Calally · 06/11/2011 10:34

thank you all for your comments, it really has helped knowing that this is normal. to those of you waiting for a diagnosis, good luck to you. hopefully it will help or dc's in the long term.

OP posts:

mariamagdalena · 06/11/2011 17:27

amberlight, it's very reassuring to know that adult happiness is dependent on so much more than 'a full set of independent living skills'. It's one thing knowing it intellectually, but hearing someone's testimony helps much more.

I sometimes lapse into thinking DS1 is doomed if I fail to address each and every ASD impairment. Which is obviously nonsense, and I would probably have recognised that years back if he had a more 'visible' disability. Thanks for the dose of reason!

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