Almost all information about PDD (specifically autism) is geared toward children. I’m finding it terribly hard to find anything out about adults with autism.

Any references to material dealing with adult autism would be appreciated.

Anna Kennedy has written an autobiography that doesn’t hide the pain of being the mother of two autistic children, but the bulk of the book is about triumph. In 1999, she and her husband opened a special-needs school in order to ensure that the needs of her children would be met.

The author felt overwhelmed when her first son was diagnosed with Asperger Syndrome, a form of autism. That was before she discovered that her second son had autism and would need a lifetime of care.

Although Kennedy resides in Great Britain, American readers will relate to her struggle to raise and educate her children. The book covers her courtship with husband Sean, through the birth of their sons and the boys’ teenage years.

Parents of autistic children will relate to the multiple doctor visits for testing and evaluation, the tantrums, the lack of physical affection. Kennedy tells her story in a down-to-earth style that makes her seem like an old and cherished friend. She doesn’t hide her frustration and sorrow.

“He was obsessed with shapes and patterns and worst of all, he’d scream if I touched him,” she writes of her first son, Patrick. “His refusal to show his love was heartbreaking.”

When her second son, Angelo, was diagnosed with autism, she says, “I was devastated and cried for weeks.” Her honesty makes her more relatable to readers.

By the time the boys were eight and five, they had been turned away from 26 schools for children with special needs. All of them had waiting lists. So she decided to start her own.

“It all started from sheer desperation,” she writes. “There were times when I rang my mum and just cried and cried over the phone.”

Although Kennedy discusses the process of getting the school up and running, this isn’t a how-to manual on starting your own educational institution. The emphasis is on her children, their development and how she and her husband were able to cope with problems they encountered.

Sometimes, it was exhausting just to physically care for Angelo, who sleeps about three or four hours a night and routinely wets the bed, even when he’s awake.

“Do I ever think, ‘Why me?’” she writes. “Only for a second. The thing I crave most is a little peace and quiet – and some sleep!”

But the book also exposes a rich array of friendships that Kennedy gained through her networking with parents and educators. A favorite teacher is highlighted for his work, and the growth of the school is outlined in terms of new needs and changing staff. The author doesn’t avoid discussing growing pains with the school, or her own sadness over a miscarried baby in 2004.

In all, “Not Stupid” is a frank, hopeful account that is recommended reading for adults and teens.

Not Stupid. Anna Kennedy, John Blake Publishing Ltd., 2008, 299p. ISBN 978-1-84454-507-0.

Here is a link to the Monroe County Early Intervention listing of available Development Doctors in your area

http://www.monroecounty.gov/File/Health/Child%20Psychology%20and%20Counseling%20Resources.Appendix%20A.doc

That is SO frustrating… The worst part is that your daughter may not even be ADHD (I don’t know what tests were done). Reece is NOT hyperactive, but when he is in a large crowd or an uncomfortable situation, he can get hyper. It has more to do with sensory integration… At the Strong Children’s Hospital, you bring a child with sensory integration issues into a 50′x30′ room filled with kids running around, fish tanks and color (if it is the same as when Reece was little), then he is taken to the Dr.s room and examined. OMG, I just realized something! Aiden was two when we met their Dad at Strong for Reece to be tested… Their dad has always flip-flopped on the autism-thing because he wasn’t in the room when the dr. told me to use the title of Autism when dealing with the school. He was walking Aiden around and outside because Aiden went into massive melt-down mode.

There should be more doctors in Upstate NY doing developmental diagnoses. All of his primary care physicians said something was going on with him, but would not commit. His OT and Special Ed teachers were the ones who said to me, “You know he has a lot of autistic features, and he has physical reflexes that are largely seen in autistic children.” In NY, they largely offer services based on needs, so you can still get services.

IF YOU MOVE OUTSIDE OF NY WITHOUT A DISTINCT DIAGNOSIS, ESPECIALLY IF YOUR CHILD HAS HAD SOME LEAPS IN DEVELOPMENT, YOU WILL LOSE HER IEP. That is why Reece doesn’t receive OT. His handwriting is still illegible, but I’m trying to teach him to type

Good Luck Julie

My 62-year-old brother was not formally diagnosed, but everyone who comes into contact with him now, including the helping professionals, agree that he has autism. My brother did have brain damage (oxygen deprivation at birth) and there is a theory that it can cause autism.

You might enjoy this recent post on my brother’s little run-in with a Toronto bus driver who shouted Ladies First at him a few days ago.

http://osolomama.wordpress.com/2008/10/26/ladies-first-how-it-sounds-to-someone-with-autism/

The world doesn’t get easier for people with autism as they grow older but my brother has definitely carved a place for himself. Notice how great his language is.

Catana! I love the way you described your hopes. I feel the same way; it is why I am SO determined to build-up my children and make them feel secure in themselves at home. It is the hope that they can hold onto that security.

David… Please understand that there is a VERY distinct difference that I experienced then watched my son go through. As a child, I could spatially see things in a way that I was “inside” it and knew everything about what I was looking at. Today, I could not do that. I would get lost between the systems of how things work together… if that makes ANY sense