Wednesday, April 02, 2008

April is Autism Awareness Month!

I was trying to come up with something eloquent to say about Autism Awareness Month, and I'm drawing a blank. My main purpose in being an advocate for Autism Awareness is not so you'll know that 2 of my children have autism and feel sorry for me or think I'm a supermom. My purpose is really two-fold.

The first reason is for parents. I myself had no idea what autism was, what it looked like, especially in higher-functioning children who, like my own children, did not display that marked regression that I thought was the hallmark of autism. I would just like other parents to know that there is more to autism than Rain Man, and there is more to autism than the child who is talking away until age 18 months -2 years and loses that ability. Yes, there are MANY children who have such a regression. But autism can also be present from birth, in children who talk (and keep on talking), and in children who hug you, and in children who like to be around other people. I want parents to be aware so they can get help for their children early.

The second reason is for the general public. That child you see who is screaming in the store, who is talking your ear off about the weather, who walks up to you and says that your face looks just like a Webkinz gorilla (yep, that happened on Saturday with Reece), that child may not be spoiled, rude, or self-centered. One thing that has come about as a result of my children's diagnoses is that I find myself much less judgmental when I see other children exhibiting "bad behavior" in public. I tend to give that mom or dad an understanding and sympathetic smile, rather than a look (or word) of condemnation. I have been subject to that condemnation so many times during my children's young lives, and it stings and cuts to the very heart of a parent. Of course not all children who are acting out in public have autism spectrum disorders, but regardless, I assume that the parent is doing his or her best job with the challenges facing them, and that I, as a stranger looking on, have NO IDEA what those challenges might be.

This wikipedia article on Aspergers is chock-full of information, including a breakdown in characteristics that is more thorough than a mere checklist. It is also helpful when considering High-Functioning Autism, as the Core Deficits are the same for all Autism Spectrum Disorders.

I'm not going to be leaving this up all month as I have in previous years, so bookmark this page if you want to come back to it! :)


Anonymous said...

I am most thankful for the progress my autistic son has made in life - when he was young I was told by medical experts that he was a write-off.

My husband and I split up before our son Howard was born. He left the city and I had no idea of his whereabouts. I didn't tell anyone that I was pregnant as I was afraid I'd lose my job. The last straw was when a debt collector called because my husband had taken his car, which he hadn't paid for.

Howard is profoundly autistic and asthmatic and has diabetes. As a child he was hyperactive and had no sense of danger. I had to nail bars over the bedroom window because he'd climb on the sill and push against the glass. Once he butted me and chipped my two front teeth when I picked him up quickly to save him from danger. He was refused education as he could not speak until he was 9 or 10. Doctors told me to place him in and institution and forget him. They said he was a ‘write-off’.

I always worked, there was no choice. Social security money would have been insufficient to keep Howard. He always had a large appetite and his extra large-sized clothes were expensive.

In 1973 my son received an official letter saying my ex-husband had died. He'd never remarried so my son was his only relative but nothing was left except enough to pay the burial expenses. In those days there was no allowance for a disabled child or lone parent. I managed to get enough cash to buy a very old house with no bathroom and an outside toilet. It took ages to clean up and get rid of the mice and cockroaches.

Once, when Howard was very small, I gave in and applied for help from a charitable organisation set up to give financial and other support to unmarried mothers, widows and widowers with young children... I felt so embarrassed when they turned me down flat telling me it was my husband's duty to support my child and me. (Unfortunately the phrase ‘Tell me about it’ had not yet been ‘invented’). The stigma of being a divorcee with a handicapped child was very strong.

I am proud of Howard. Many will always consider him as being a "bit odd" but he is popular and has a tremendous sense of humour. He is great company and is kind and affectionate. A few years ago we both signed on for part-time computer courses to try to gain an education which we both lost in our youth. A disability officer at the Job Centre had referred Howard to the classes and I joined too, partly because I felt he needed a helper to cope. I need not have worried. We both became hooked and ended up signing on for a full-time course at a local college. My son became so proficient that the tutors nicknamed him "cyber-junkie". I wrote a piece for a presentation which I entitled, ‘Cyberwrinklies’ and that nickname stuck.

We completed the second year of full-time studies and gained Btec diplomas in computer studies. Howard's assignment was about shopping on the internet and mine was about older people online. Despite his slight speech impediment he gave a great 20-minute presentation on the subject to the class and tutors. We were both thrilled to gain our computer science qualifications and went on to complete our studies in local universities. In 2003 Howard graduated from University - computer science. We are both happy and have made lots of friends through our IT interests. Our lives were transformed. We won despite stigma.

Niffercoo said...

Thank you so much for sharing your story!! {{{{{{{}}}}}}}}

The Glasers said...

Wow!!!! That is a tissue moment!

All I can say Jen is I could add a few more rants. . . Now when I see a beautiful child having a fit at Wal-Mart, I try to give the parent a warm, encouraging look because I remember all of the dagger looks.