Sunday, April 25, 2010

Autism Awareness Beyond Temple Grandin: Who Will Care for Our Children When We Are Gone?

April 30 is fast approaching and Autism Awareness Month has been marked by the usual stories about the remarkable accomplishments of author, public speaker, very well educated and extremely successful entrepreneur and innovator Dr. Temple Grandin arguably the most accomplished and well-known adult with autism in the world.  Beyond the Temple Grandin stories there is also the usual  speculation that Einstein, and various other historical geniuses,  were autistic.  The identification of autism with historical genius is  led by academic Michael Fitzgerald of the Department of Child Psychiatry at Trinity College, Dublin, who "has speculated about historical figures with autism in numerous journal papers and at least three books".  

Seldom do autism awareness efforts feature the harsher realities faced by many with autism disorders, particularly those with Autistic Disorder   who can not and, unlike Temple Grandin, do not,  become able to speak or otherwise communicate.  Not much is said about autistic children who are seriously self injurious , who drown in neighborhood schools or wander into deadly snow storms or  automobile traffic.  One of the most glaring omissions is the failure to make any, mention of the 75-80% of persons with Autistic Disorder who are also cognitively impaired or intellectually disabled.  Temple Grandin is one thing but it would be much more difficult to hire a talented and beautiful actress like Claire Danes to put a pretty face on autism if the person she was portraying was  intellectually disabled and destined to spend her life in a  psychiatric hospital. 

Parents of children with autism disorders, at least those whose children are severely affected by autism disorders,  do not have the luxury of pretending that autism is a blessing.  Many of us  are haunted by the Ultimate Autism Reality  and wonder who will care for our children after we die. We   have to live every day haunted by the reality that our children will be unable to care for themselves and will live dependent on the care of strangers. 

Virginia Bovell writes about the ultimate autism reality in the Daily Mail in Who'll be there to care for our autistic son when we're gone?

"Danny was diagnosed with autism when he was three years old. He is now 16 and, alongside his severe learning difficulties, this year he has been in and out of hospital with chronic gastrointestinal problems.

He is often in intense pain and is on a fair bit of medication. We keep daily charts, we observe changes in minute detail, we adjust dosages - it is like a meticulously calibrated battle plan.

When he is well, it is as if he doesn't have a care in the world. He is cheerfully non-verbal - he has only a few words, such as 'momma', and 'diddle' for daddy. He is also happily and unresentfully dependent on others for most of his waking life.

On a good day I am optimistic for Danny, but if I'm honest, worry often keeps me awake at night. Because he doesn't speak, and understanding him requires close observation, I wonder who will love him enough to give him the levels of meticulous attention that a parent would."

Ms Bovell, and the Daily Mail, are helping create some real autism awareness as April draws to a close.  It may not make for a feel good movie but what they describe is the Ultimate Autism Reality.


Stranded said...

At a financial planning workshop in Mississauga there were 80 year old men with their autistic sons in their 30's, there to seek help. That is the reality. At 80, if you are still alive, a parent is still seeking help for their disabled child.

The answer to your question is no one.

Larry Arnold PhD FRSA said...

Harold I hope that your response to this next question will not come from prejudice.

Who would you prefer, given the choice of two equally trained professionals, one who had a diagnosis of an autistic spectrum condition, or one who had none?

I would submit that the former would be more valuable.

You at the very least ought not to have a prejudice either way, so I wonder what your answer is?

The fact is there are many autistic adults who are not so much interested in the advocacy you see so much of, but in practical care and intervention.

Some I do know to have good results beyond the ability of the childs parents to understand what is going on.

Astrid said...

I agree that we need to focus on the care needs of autistics, including those with intellectual disabilities. (FYI: not all autistics without intellectual disabilities, can live independently. I, for one, cannot.) I also agree with you that I've had it with Einsteinaise fluff about autism. (As a side note, Fitzgerald is being discarded by the autistic community over his most recent book, which alleges some serial killers have Asperger's.) I think the emphasis on Einsteinaise tropes distracts the attention away from autistics' real needs. However, can you tell me who actually said autistics with intellectual disabilities shouldn't be getting the care they need, or that these people don't really deserve of media attention?

Jennifer said...

Have you heard of the Brain Balance Program? They have something called "Pre Brain Balance" for those with more severe disorders. They are doing some great work in my area so I just wanted to mention it. My friend's son has moderate autism and has greatly improved after doing Pre Brain Balance and Brain Balance. I've been to an informational meeting because my daughter has SPD. It's worth a look!

Claire said...

The Author wrote: "Who would you prefer, given the choice of two equally trained professionals, one who had a diagnosis of an autistic spectrum condition, or one who had none?"

The person whom a parent wants to care for their child is the person who loves their job and the children/adults they work with. Diagnosis is irrelevant. Have I also not always heard: once you've met one person with autism, you've met one person with autism. How is it that some higher functioning people with autism feel they understand all other people with autism, even to claim they know more than the parents of autistic people? It flies in the face of logic.

Anonymous said...

Yes who would be there for our children when we die, we so badly need to focus on the future for the children who are well alive fighting with this disorder who need constant assistance! I totally agree! I think that should be a main concern for our world, but it seems like everybody is all about a cure or research, as a mother I am all for that, However my child at 17 sadly won't ever be seeing a cure. I frankly won't give two craps if they find out all along it was all environmental what caused his autism, what my concern is and will always be is whether my son will have value, respect, and live a life without me after I am long gone!

I think we as all parents need to wake up, and start thinking of that before anything else. Time is ticking, we can't keep spending it all on trying to get rid of autism, especially for the individuals who are living with this wretched disorder now suffering as we speak! Right now society treats my son like a pet, take care of him until he dies, no that is not right, he is every right to be here just like anybody else and one day it'll be at the moment where all these cute precious autistic children whom you see on the television or pictures on websites, grow up to be older not as cute sometimes even violent autistics who will be apart of this society with no help provided! That's reality and that is scary! When are we going to wake up, and realize we need to do more for our growing autistics!

Jaclyn [mother of severely epileptic autistic son]