Tuesday, November 07, 2006

Whether to Laugh or Cry

This blog only started a year ago, but we've been living at autism's edges for six years.

For six long years we have been consulting specialists -- supposedly some of the best in the country -- and, with the exception of the school psychologist, who once (erroneously) suggested that Sweet M has Aspergers, no medical professional has ever told us that Sweet M has autism spectrum disorder. Her psychiatrist once called her "spectrumy" -- but when asked if she was ASD said no.

I have a $3,000 neuropsychological evaluation done just over a year ago (that I still haven't finished paying for) that says unequivocally that Sweet M doesn't have ASD.

Of course from our own research, and from reading dozens of wonderful blogs, we knew that all arrows were pointing to ASD, but no one ever stepped up to the plate and said ASD.

Yesterday, finally, a psychologist said the words, "Your daughter has austism spectrum disorder." She even pulled out her well-worn, yellow-highlighted paperback edition of the DSM to go through the diagnostic criteria with us.

Sometimes it's hard, even for we neurotypicals, to know what the appropriate response should be. On one hand, I felt like laughing and saying, "Ah-duh, tell me something that I didn't know." And on the other hand one wants to burst into tears:

• of relief for having someone see the full complexity of Sweet M's issues
• of rage for having been dragged along with partial views for so long
• of grief for the time we may have lost in not having an adequate Dx and getting Sweet M all the supports and assistance that she needs

We've slipped right over the boundaries of autism's edges, into a new-old, familiar-unfamiliar terrain with our new Dx, our new visa. And yet everything is still the same: Sweet M is still delightful, dazzling, and sometimes difficult.

I feel as though there ought to be a road sign: Welcome to Autism. You are now leaving Diagnostic Ambiguity.


Maddy said...

In truth, we all cry and laugh with you.

Mom said...

And we're all here for you too. It's a club that none of us would have joined willingly, but here we are.

John Best said...

Better get in touch with www.generationrescue.org right away.

Mary said...

It's hard to know how to react on this end as well, so I'll say this:

Congratulations. I'm sorry.

kristina said...

On more than a few days with Charlie, I laugh so hard I am crying----and vice versa, on occasion.

MothersVox said...

Thanks everyone . . . It really is a laughing-crying sort of day. Nothing changes and everything changes.

Neurodivergent K said...

Welcome, both of you, to our country. Finally made it through customs. Here are your binoculars, and the sight seeing guides, well, those you have to make for yourself. Enjoy.

Since Sweet M is no dummy, I'm sure she knows...might I suggest a teddy bear wearing a pro-autistic pride shirt or a button of some sort or something as a "congratulations! there are more people like you!" kind of 'diagnosis gift'? I know it sounds odd but I know a few parents who've done similar for their kids upon explaining autism, or advocacy, or recieving a dx. There are some good ones on cafepress.

I'm glad you finally got an answer. You've lived her whole life knowing that Sweet M-ism isn't a tragedy, that she isn't broken, that she just needs an alternate approach...and now you have the sticker to put on her name tag that says "autism" that gives a clue to what that alternate approach IS.

Autism is a beautiful world. Welcome home, to you and especially to Sweet M.

MothersVox said...

Thanks Kassiane. What you wrote is has so much truth in it that it made me cry.

Donna Satterlee Ross said...

We are working on a book addressing that very issue--"to laugh or cry" about autism. We've actually chosen to laugh. The book is called "The Lighter Side of Autism" and will be published in 2008. Share your humorous story (something that made you laugh out loud) about your ASD experience. Send to diagnosisautism@gmail.com

Even when you know something is wrong, its never an "easy" thing to hear. However, when you get the diagnosis you know "hey, I'm not crazy" someone 'professional' actually believes me. When I took my daughter to the hospital for seizures they asked me if I'd shaken my daughter. Thanks a lot, right? Good luck and know there are many people who have had similar experiences. It doesn't make it easier, of course.