Greetings,
This is a ranty post, but one I think is fairly warranted given the article I just read (which I will post in its entirety at the end)
Interestingly enough, it was published on April 4, 2009 - the same day I was attending workshops at the Victim Services conference I was at. You know... a conference where they talk about ways to help real victims of crime, loss and tragedy.
Also interesting was that I did a speech at a conference just yesterday on this very subject!
The title of the post on alt.support.autism that started this whole mess today: AUTISM: What Happens To Victims After Parents Die? Dark Days Loom ...
(Give me a break...)
The actual title of the article: Still Overlooking Autistic Adults
(Not as bad as the sensationalist who posted it to the Newsgroup... Thank God)
The link to the article if you'd like to read it: http://www.washingtonpost.com/wp-dyn/content/article/2009/04/03/AR2009040303169.html
My response to the sensationalist on the newsgroup who calls us victims:
The following is a rant. If you don't want to see a rant, please stop reading my post now and delete it...
If you do want to see a juicy rant, please read on...
This "victim of autism" got married, moved out of her home town, bought her own house and makes good money at a full time job. This "victim of autism" has voted at every single election on all levels since she turned 18. This "victim of autism" is actively involved in her community and has written to her Member of Parliament with regards to autism related issues whenever she felt moved to do so.
This "victim of autism" is also making good money, so when her parents die, this "victim of autism" will likely be paying some overdue bills and such and arranging their funerals. This "victim of autism" also pays more in taxes than her parents do right now, so this "victim of autism" is not taking from the system, but supporting it quite well and has been doing so for the past 20 years.
This "victim of autism" does not appreciate being called a victim of autism or a burden on society because she is neither!
This "victim of autism" also realizes she's an odd duck compared to many autistics who do require certain services, but she also does not think that the constant comparisons of autistics to victims is of much help to anyone, autistic or otherwise.
How is that helping? (It's not)
Who is that helping? No one.
I've seen real victims in my volunteer work: victims of crimes, victims of tragedies and victims of catastrophes. People who have been through some truly horrible things - sudden deaths of family members, sexual assaults, robberies, kidnappings, fires, shootings, etc.
I think it is an insult to call autistics "victims" (unless they have been truly victimized by someone or some event).
I've worked with people who are dying of cancer or have been rendered disabled by accidents, brain injury or genetics. They get lots of compassion, support and I don't see *anyone* whining on about how much of a "burden" these folks are!
Honestly! Can we please get off this "victim just because one is autistic" bandwagon already?? Enough already!
My rant about the abysmal lack of appropriate services and supports for adults on the autistic spectrum, which is what this article is actually about:
It's time to stop focusing on blame and start focusing on providing the needed services to adults on the spectrum. I was at a conference yesterday and this very subject came up... transitioning to adulthood and "what next?".
I ask: Why is this such a hard thing for people to grasp? This is not exactly rocket science. Look at any other disability of a model is needed.
Why is it that society has all sorts of services for adults with other disabilities or medical conditions, but autism seems to be such a big problem?
There are lots of people out there needing help of some sort, not just autistics! What makes autism so darned different and such a flippin' hardship to society??
Why is that people can't seem to get it through their heads that autistic kids grow up to be adults who still need help?
Why do services end at 18?
Let me clarify something: Do autistics need more therapy? No.
They do need supports - cleaning, finances, etc. Yet, government officials seem to have issues wrapping this concept around their thick heads. They may even need some counseling to undo some of the damage done by the so-called therapies out there which only look at behaviours. (Another rant for another day...)
In our province, supports for adults have been a nightmare, as I'm sure it is all over the world. One has to have an IQ of under 75 here to get any kind of help. No wonder parents are worried. Like they need anything else to worry about.
People....call me naive, but should these things have not been taken into account *years* ago? Autism isn't *that* new, for Pete's sake!
What is wrong with society that this simple but very real issue has never been considered or even addressed properly like it has been for other medical conditions, etc.?
Seriously, if these so-called "autism advocates" (the non-autistic variety) expended as much energy into setting up needed services (in-home supports, cleaning, financial help...whatever the need is) for adult autistics as they do ranting and raving about vaccines and "big pharma conspiracies", we might start seeing things get done!
We might start getting some appropriate, decent and (brace yourselves) helpful services for adults!
Priorities. That's the magic word here. It's time society and these non-autistic so-called "autism advocates" started getting theirs straight. So do the governments.
The parents seem to have their priorities straight (well... most of them do). When is everyone else going to catch up?
*whew* Sorry about that, folks...
Rant over.
___________________________________________________
The article reposted here in case the Washinton Post blocks it:
Still Overlooking Autistic Adults
By Linda H. Davis
Saturday, April 4, 2009; Page A15
Question: What coming social expenditure will cost more than a third of this year's budget for the Department of Health and Human Services and be larger than the entire current budget of the Energy Department?
Answer: The bill for the tide of autistic children entering adulthood over the next 15 years, an estimated $27 billion annually in current, non-inflation-adjusted dollars by the end of that period. The number of autistic children expected to need extensive adult services by 2023 -- more than 380,000 people -- is roughly equal to the population of Minneapolis. If a town were created to house this group of people and their caregivers -- for you can't separate the two -- it would exceed the population of all but six U.S. cities. If they formed a state, it would have four electoral votes.
But most of these cognitively impaired citizens don't vote. Most of them can't live alone or work in public places. Many can't even take public transportation by themselves.
Yet as World Autism Awareness Day passed this week, with the wrecking ball swinging at all levels of social services in this devastated economy, the challenges of adult autism continue to be overlooked. Many news reports focus on whether vaccines cause autism, the need for a cure or the education of autistic children. Autistic adults are relegated to the sidelines. Even the Obama administration, which has pledged better care for disabled Americans, including those with autism, has not been specific enough about its plans for those who will probably never be able to live independently or be part of the traditional workforce. "Improving life-long services for people with ASD," as autism spectrum disorder is known, is a worryingly broad, detail-free promise in the White House agenda published online.
I understand that no one wants to look at a child and imagine the clunky, in-your-face adult he or she will become or think about the stares he or she will induce. When I look at my pudgy 22-year-old son, Randy, still sweet-faced but so obviously disabled, I cannot locate the blond cherub he used to be, gripping his stuffed brown bear. While writing this, I listened to Randy getting into the refrigerator (he's home again from his supervised job -- two mornings a week -- because of another problem with the overwhelmed human services provider funded by the Commonwealth of Massachusetts), and wonder who will love or at least protect him when he ends up in a group home run by an underpaid, overworked staff.
Randy's father and I are keeping him at home as long as possible, even as I'm battling an incurable cancer. The inadequate state services and perilously thin funding have seriously hampered our ability to work while caring for our son. I feel as though we're playing Russian roulette with Randy's future, yet I cling to my gentle son, unwilling to entrust him to a system that grows more fragile than I do.
Randy is just one of hundreds of thousands of autistic adults to whom society pays frighteningly little attention. The price of their care will affect all Americans, not only those who have autistic children. Along with housing, day programs, transportation to those programs or jobs, and higher-than-average medical costs, adults with autism require steady supervision and support. Consider: A well-behaved, relatively high-functioning person such as my son could manage in an environment that has a ratio of three clients per staff member. But many autistic people require a one-to-one ratio. This is a serious hurdle, not least because of the high turnover rate among those who provide direct care, which stems in part from their low wages. Not everyone is temperamentally suited to this work. People with autism present myriad challenges: They can sometimes be violent, sometimes are self-abusive, suffer psychological meltdowns, or behave in many socially unacceptable ways, to say the least. Women, traditionally cast in the caregiver role, are at risk of greater physical harm when caring for autistic adults than for children. At expected rates, we will need to find an additional million caregivers, people who must have the right personal qualities to work with autistic individuals but who are willing and able to work for low wages. This is no small challenge. We not only must train people but also show that we value this work by paying them better.
In 15 years, the cost of care just for the autistic children entering adulthood over that time will be about equal to the current state budget of Tennessee. Meanwhile, services are dangerously strained, and the influx of autistic adults is underway. This country urgently needs to focus on adult autism, new models of care and new sources of funding. Before the looming tidal wave delivers another crushing blow to our economy, we should have a national discussion. It should begin today.
Linda H. Davis is the author, most recently, of "Charles Addams: A Cartoonist's Life" and is president of the nonprofit SAGE Crossing Foundation, formed to create a farmstead for autistic adults. Her husband, Chuck Yanikoski, who is treasurer of SAGE, contributed to this piece.
