This week, Autism Speaks - America's largest autism-oriented non-profit - announced its five-year anniversary and asked:
We want to hear from you - how has autism changed since 2005? What progress has been made in research, legislation and awareness? How has the autism community changed?
This question intrigued me; indeed, I have plenty of responses to offer, since my son was diagnosed with PDD-NOS in 2000, and I've been the About.com Guide to Autism since 2006. Over that period of time I've seen controversies rage, new leaders rise and fall, and the "invention" of the Green Vaccine and Neurodiversity movements. So far, I can certainly say it has never been boring!
But then it occurred to me that by asking "how have things changed?," we may be setting aside the reality that, every day, many new families are being confronted with the possibility or reality that their child (or they themselves) may be diagnosable on the autism spectrum. These folks (and you may be among them) are diving into a complex world of controversies and uncertainties - and it's up to us, the "autism veterans," to welcome them and make them feel that they've joined a real community of support.
So... please join me in welcoming anyone new to the world of autism. Before you dive in too deep, or get too overwhelmed with all the research, therapies and IEPs, take a few minutes to breathe. Join the Autism at About.com Forum and ask questions. And check out some of these articles written specifically for you!
- Tips for Parents New to Autism
- What If...? Getting Past Blame and Worry to Help Your Autistic Child
- Before You Drive Yourself Crazy Over an Autism Diagnosis
- Terrific Traits of Autistic People
Join the Autism at About.com Community on Facebook!
I am a veteran. My son’s diagnosis process began when he was about 2 ½ years old, which is when I brought him in for hearing tests because I had been noticing both a lack of response to me and to others and a lack of speech development. He is now 21. Although there is much controversy over whether or not the real numbers of people who have an ASD have gone up, there is no argument that the published numbers have gone up beyond dramatically. When my son was first diagnosed, I was told that he was a rare child indeed since only 1 in15,000 births resulted in an autism-related diagnosis. Most recently that published number has gone down to below 1 in 100 births.
While some would say there is strength in numbers, I see it as a double-edged sword. While my son encounters more awareness about what his difficulties entail, he also encounters a lot more fear and prejudice. While he is now able to say he is part of an identifiable community of people with autism, that community is honestly split down the middle by notions of whether autism should be just accepted or cured or whether or not a cause can be determined so it can be avoided and on and on and on. There is even a question whether or not that community accepts him (since his diagnosis is only PDD-NOS).
General funding issues also loom larger than they did when my son was first diagnosed. My son’s school system, which had no experience with children with autism prior to my son entering, was prepared to entertain trying different ways to accommodate my son… I believe probably in part because they believed they would be funding and doing such things only on rare occasions, Now, by most parental reports, schools are becoming very resistant to such ideas and genuinely fearful about the impact having so many children with autism in their systems will have on their overall budgets. Community health systems and health insurances are also feeling the pinch. So are governments. I honestly see evidence of much more fear of autism than I did in those early years.
Then there is the fact that I still struggle to understand his changing needs and he often simply does not have the ability to fully explain his needs to me. In the end, I have never had a crystal ball, a pot a gold, or unusual skills to fall back on. The only tool I have is my overwhelming love for my son. However, someday he will probably have to make his way in this world without me there to parry the “slings and arrows” this world might send his way. I fear that day most of all and can only hope it will be a better world for him than it currently seems to be.
PS: I’m sorry if all of that sounds depressing. It has been a tough week.
On the positive side, I have my son – THE most wonderful son in the world (IMHO)… an inescapable, albeit perhaps undefinable, blessing in my life!!!
Oops – bad typo. My first post should read: “When my son was first diagnosed, I was told that he was a rare child indeed since only 1 in 15,000 births resulted in an autism-related diagnosis. Most recently that published ratio has gone up to above 1 in 100 births.”
” it’s up to us, the ‘autism veterans,’ to welcome them and make them feel that they’ve joined a real community of support.”
I thought it was our job to grab the newbies and brainwash them into believing our pet theories before they knew any better. I thought I was doing something wrong…
Once your child is diagnosed with autism, not all parents take the same paths. Not all people keep up with the changes to pay attention to them all (it could be impossible to keep up with them all). I believe for the first few weeks for new parents to autism, it is over whelming for many. A lot of this would have do to with coping levels and family support. I also think for each new parent, it doesn’t take them long not to be newbies of their own child with autism. It doesn’t take long to become an expert of your own child. The autism community can be confusing with a ton of info out there, nothing out there is going to magically point any parent in the right direction, what actually does that pointing is the parent finding what works for their child. And that is where the hope lies for us all. Parents finding their way through that child. The only one who finds that path is the parent, and that is true of 5 years ago or present day, really no matter what went on in between.