Amy Mackin is a writer in the Boston area. She blogs at www.amymackin.com.
Several inspiring people with autism and their families were profiled on Katie Couric’s showthis summer. It was wonderful to see part of a talk show dedicated to educating people on what it is like to live with autism. But part of the autism spectrum wasn’t shown — the part almost never seen in mainstream media. Where are these people?
I am a parent of a child with autism, and I am lucky. My son received the support he needed when he needed it and falls into the part of the spectrum known as “high -functioning.” He has developed coping mechanisms to deal with his anxiety and sensory challenges. He has learned to tolerate some flexibility when his routine is disrupted. Most important, he is now able to share his extraordinary intelligence, his endearing personality and his unique social conscience.
Yet the autism spectrum is wide and diverse, and many who suffer from severe autism will never reach the level of functioning that my child has achieved. Although these people are also part of the story, we rarely hear their stories.
These people react so severely to sensory stimulation that they will seriously injure themselves as a way of relieving the stress. They are often nonverbal. Some require headphones streaming soothing music or familiar voices in their ears just to leave their regular environment for a short time.
Children and adults with autism this severe exhibit behaviors in public that mainstream society views as completely inappropriate. They mumble or yell involuntarily. They may reach out and grab a stranger’s hand or stroke someone’s hair.
I am not referring to people with nonverbal autism who have average or above-average IQs — those who possess the cognitive ability to communicate but whose bodies betray them. Computer applications and other technology can help these people communicate and do many of the things anybody else does, if a little differently.
Instead, those whose stories I’m missing do not have the intellectual ability for communication, whose IQs fall into the severely or profoundly impaired range. These are people who will never read or write or type. They will never graduate from high school; they will likely never marry or hold a job.
When I advocate autism awareness, it’s this hidden spot on the spectrum that I champion.
No one disputes the incredible importance of early intervention — the program of beneficial therapies started well before age 5 — and continued social-skills training and support within the educational system. Certainly much more work can be done for all people who struggle with autism. But when I fantasize about finding a cause and a cure, when I dream about a wonder drug that could reverse the effects of autistic disorders, I don’t think about my son or others like him. I think about those at the bottom of the spectrum — their daily struggle and that of their families.
The world is slowly becoming more aware and more tolerant of those who live with autism, but to understand the breadth and diversity of the spectrum, and the impact of living with these disorders, we must see the entire range, not just the hopeful, inspirational stories.
We must see the pain of a parent who watches her child smash his head against a concrete wall, who throws himself on the floor of a store because he simply cannot stand the fluorescent lights another second; the person who starts violently screaming because the crowd getting off the subway terrifies him. We must feel the anguish of compassionate caregivers when everyone around is staring at their loved one with horror and judgment.
We must comprehend the grief of parents who are forced to acknowledge that their children may never be able to care for themselves, and we should consider all the future decisions and worry that realization encompasses.
Many personal stories about autism make us smile and renew our faith in humanity. But some stories will make us cry. They should, because autism can also be terrifying and hopeless. This side of the spectrum still lurks mostly in the shadows. But to fully understand why we search so exhaustively for answers and doggedly seek a cure, these stories must be seen and heard, too.
Autism is known as a complex developmental disability. Experts believe that Autism presents itself during the first three years of a person's life. The condition is the result of a neurological disorder that has an effect on normal brain function, affecting development of the person's communication and social interaction skills.
People with autism have issues with non-verbal communication, a wide range of social interactions, and activities that include an element of
play and/or banter.
FAMILY SUPPORT SUBSIDY PROGRAM
Michigan has a program to help families who care for their children with severe disabilities at home. The Family Support Subsidy Program can pay for special expenses the family has while caring for their child with severe disabilities. This financial support may help prevent or delay placements outside the home. In other cases, the program may provide the funds necessary to allow children to return from placements outside the home.
Supporting families of children with severe disabilities in this way allows families to stay together. It gives them flexibility in purchasing special services and saves money for the tax payer by avoiding or reducing the need for more costly placements outside the home.
The Michigan Legislature passed the Family Support Subsidy Act in 19R3. The Department of Community Health and the CMHSPs administer and implement the act.
CMHSPs can provide additional information on the Family Support Subsidy Program. Questions or requests for applications should be directed to your local CMHSP.
The application is a simple, one-page form that needs to be completed
annually. Please contact Sue Nutini at 482-9400 if you would like an application form.
AAOM INSURANCE COLLABORATIVE: A COMPREHENSIVE INFORMATION PORTAL
Form of autism might improve with simple treatment, study says
Rare Autism Form May Improve With Diet Change, Study Says
An Immune Disorder at the Root of AutismBy MOISES VELASQUEZ-MANOFFPublished: August 25, 2012
Doctors announce FDA-approved trial to cure autism with cord blood
Little Evidence Supports Autism Treatment Options in Adolescents
Here is a link to the Autism Spectrum Disorder Foundation (ASDF) - Worth checking out!
A link to a National Institute of Health page dealing with autism.
Giving professionals and parentsthe knowledge and skills to support individuals with Autism Spectrum Disorder in reaching their greatest potential
You can support us through the Keweenaw Community Foundation. Click on our FINANCIAL SUPPORT tab and scroll to the bottom of the page for directions.
The Keweenaw Community Foundation administers a number of community funds. Established in 1994, the mission of the Foundation is to promote philanthropy, develop and manage permanent endowments from a broad range of donors, and award charitable grants that enhance quality of life in the Keweenaw.
Click on the AUTISM INFORMATION tab above for more information.
FAMILY WANDERING EMERGENCY PLAN