Help coming to terms with Aspergers

[smudgerelli]

Hi everyone I'm a new member. Last week my 9yr old DS was diangnosed with Aspergers & I'm finding it difficult to accept it. I've spent 6 years being passed from doctor to doctor over my DS difficult behaviour. Feeling like I wasn't being taken seriously.

Now I should be pleased that I've finally been listened to. My son will get the support he needs. Yet I feel angry that nothing was done sooner. Now its feels like I've come to end of the road. "This is it". "That's the way he is". "Nothing can change him". Don't get me wrong, I'd die for my son. Nothing would change how I feel about him. Sorry for this rant. Just can't find the words to describe how I feel.

He also has ADHD, diagnosed last year. Which is fine. I can manage that. He's taking meds. It's more readily understood by none SN parents. I don't understand why I feel so differently compared to the ADHD diagnosis.
Has anyone felt like this? Family & friends don't have SN children.
Also can anyone recommend a book for parents caring for a child with AS?

Hello smudgerelli and welcome to the SN board. I can relate to how you feel as my 8 year old DS was diagnosed with ASD last year at 7.5 years. Like you I felt relief that we finally had a diagnosis but also like you it was a case of "that's it, this is how he is" without wanting to change him for the world.
I felt like I'd been hit by a brick when DS was diagnosed and it took a few months to settle into the diagnosis and accept it. I felt numb, shocked, shaken and relieved all at once. My DS also has ADHD so I can relate to that too.

There is a book by Tony Attwood about Asperger Syndrome (although the title escapes me) it came highly recommended to me by a Mum I know who has a son with Aspergers and ADHD. The National Autistic Society are also worth a look. I also have a book which DS lovesd called "All Cats Have Aspergers " which apparently has a partner book called "All Dogs Have ADHD". Amazon are worth a search for stuff too - read the reviews to get a feel for how useful the books are.

Finally - are there any parent support services around you. I am in Essex and attend a group with DS for children with additional needs, it has wonderful parent support too and most areas have something even if it's small.

Hope that helps a bit.

Ds2 also has Asperger's - our dx is verbal. I can recommend the book All Cats Have Asperger's Syndrome too. It just arrived on my doormat this morning and it was so written for ds2. I think it has great value for other people who just don't 'get it', and it was lovely when I showed it to ds1 who as he read through it said it made him think of his brother. We are just beginning to tell him and dd about ds2, and telling ds2 himself as well and this seemed a good way to explain things gently and with humour.

I especially like the bit that says 'sometimes his relatives think they could bring him up better than his parents can'!! That touched a nerve!!

Tony Atwood books are Asperger's Syndrome, and The Complete Guide to Asperger's Syndrome. I haven't read them, so can't recommend at the moment. Suffice to say though you're certainly not on your own.

Hello smudgerelli

I also have a 9 year old ds who was diagnosed with Aspergers at the end of January.

I think most of us on here whose dcs have got a diagnosis will have gone through a similar thing. Its such a conflict of emotions. As you said, obviously you know that he will always be your ds and you will always love him - that will never change, but you are faced with the realisation that his life isn't going to be the way you had envisaged it and he will have a lot of struggles along the way. That's hard to face for any parent, as essentially we all want to make our dc's lives as happy and stress free as possible.

I was on an emotional rollercoaster after ds was diagnosed. I was relieved that we'd finally been heard and he'd got the diagnosis he needed to access the right support, but at the same time, I was sad for him and the uncertain future he faced and scared of the journey I knew we were embarking on in terms of fighting for the right support etc.

I think its important to remember that Aspergers is a developmental delay, so nothing is set in stone. It isn't true that nothing can change him now, the ds you know and love will learn, grow, change and develop. With your love and support he will overcome some of his difficulties and learn to compensate for others.

Do you think the difference in the way you feel about the AS as opposed to the ADHD diagnoses is perhaps because the general perception of people with AS is that they lack empathy and are unemotional or difficult to get along with, whereas people's perception of ADHD tends to be of hyperactivity or an excess of energy?

It would definitely help to do some reading around the subject. The first three books I read about Aspergers were:

Tony Attwood's Complete Guide to Aspergers This is the one most people recommend.

Parenting a Child with Asperger Syndrome I found this book really reassuring and positive.

Appreciating Aspergers Syndrome Written by the same person as the previous book (Brenda Boyd) this one is a nice balance to all the clinical information etc.

I found the last two in particular very reassuring.

Has he got any support in place at school? The school should now bring in the ASD Inclusion Team to support your ds and offer support and guidance to the staff. They can help with any problems he's having and help with social skills training.

Other than that have a and a big bar of chocolate on me.