In need of wisdom- newly diagnosed ASD.

[Mollyweasley]

Hi!

My son is 7 and has just been diagnosed with Asperger's syndrome. The report is not final yet but we know. It's very odd because for the last 6 years, I've been looking at what made him different and why we struggled with discipline with him when we didn't with our other children. We knocked on many doors with little success until this year. Although success is not exactly an appropriate word. When we found out,I've spent a few weeks very angry with the system for not seeing it and now I seem to be depressed and stressed. I wonder how it is going to affect the rest of his life. Will he be happy? Will our family be happy as we go through the challenges or raising an ASD child? I was wondering whether any of you have gone through these feelings and what you might have done to cheer yourselves up!

Knowledge brings confidence and empowerment. At the moment things are frightening because there is a lot you don't yet understand and you are probably fairly alone with your worries.

It's truly horrible place just after dx so don't feel like you shouldn't be depressed or stressed as this is a normal reaction.

But don't despair either. There is a lot that can be done and a lot you can do to improve things for your family and your ds.

The first thing is probably to start keeping a log of everyone you have contact with. Log every phone call you make and informal chat with the teacher, and log any signpost or charity/support group that you come across but don't have time or energy to contact yet. Keep it all on a dated log with names, telephone numbers and quotes where you can. If you are unclear on something or it sounds like you might be being fobbed off, WRITE to whoever it was that delivered the information, quoting them and asking them to clarify that is what they said.

That will all help you keep on top of things and in control.

And I am so sorry to hear your news. It's okay to ignore the diagnosis for a few weeks whilst you unconsciously adjust.

Surely that can only mean 'get a gin and tonic inside you!'

Thank you so much for all your answers. It is certainly a lot of help to see that other parents have been through similar experiences/feelings. Thanks for the tips and the optimism, it's want we need at the moment (and a gin and tonic!).

If you are anywhere near London, the Maudsley offers a one week course for parents of children newly diagnosed with ASD. We found it really helpful, and it's nice to be in s room full of people who 'get it'.

One thing everyone says is it gets easier. Our DS was diagnosed in July and it is already getting easier. You learn more, start working out what to do and so on. Certainly it's a bit of a roller coaster emotionally, and that seems to be the same for everyone I've ever spoken to who has experienced this. One lady put it quite well I thought saying 'it stops feeling like a trauma and just becomes normal after a while'.

In the meantime, be kind to yourself. It is A difficult time and even the strongest of people find this one hard. There are lots of great people on here full of wonderful advice and hugely supportive.

I'm sure our local branch of the National Autistic Society does a course for newly dx-d parents too, check their website. You should add it to your list anyway, lots of good info and there may be a local support group.

But for now, take your time and be kind to yourself. The land of the new-dx is a strange one. Give yourself time to come to terms with things. And I wouldn't necessarily rush to tell friends, family etc quite yet. You will get a whole range of reactions - some brilliant, some less than helpful - you need to get your own head straight first IYSWIM.

Hi molly, My Dd3 was diagnosed with ASD on her 9th birthday, we say she has aspergers as she fits that profile and its easier for her to understand.

I had been fighting the proffs for 3.5 yrs to get her difficulties recognised but even so, when the psychiatrist said the words "She has ASD" I felt like I had been kicked.

That was a year ago and we still havent told many family members because
A] They wouldnt understand anyway
B] They still wouldnt be able to relate to her anyway so whats the point.

Be kind to yourself and keep coming on here, its the most helpful place in the world

It's been 2 weeks since I've written this thread and I just wanted to thank you again. It really helped me to know that my feelings were normal and that I had to be optimistic. I let the negative feelings come and go without dwelling on them and must admit they are more and more rare. I am reading a lot on asperger/autism and watching clips from utube. I can now not believe that I have been oblivious to autism all these years......so thanks again!

Molly - meant to post when I saw you on here before - glad to hear things are feeling a bit better for you. Do browse through here as there are some very good threads about that strange and difficult time that comes immediately after dx. I know because of how they helped me! My DS was dx'd about 18 months ago, after a long looong wait and it STILL came as a huge upheaval for me. I too felt as though I'd been physically kicked and I was utterly dazed for what felt like weeks. Did really stupid things (losing keys, losing car!) because I couldn't concentrate on normal life. Everyone says that you go through the process of coming to terms with it bit by bit and it was such a relief to me to read of other people's stories on here, saying just what I was feeling. Then you find you are getting used to it and though the feelings still ambush you sometimes, and you fear for the future, it does get better. Good luck.