When most of what you do revolves around autism, you come to believe that everyone shares some kind of base level of understanding. At one-in-50, most everyone today at least knows somebody who cares for someone on the spectrum or is on the spectrum themselves.
That’s why I came away from Five Guys the other day with more guilt than the off-my-diet meal I brought home called for. I was wearing a polo shirt with The Autism Channel logo on it, and the counter clerk saw it, and started talking autism. Suddenly, I was giving advice to the mother of a 6-year-old boy who is on-the-spectrum and appears to have had no intervention at all.
The saddest are those who know, and do nothing.
“He’s getting very difficult to handle. You wouldn’t believe it.” Of course, I did believe it. She asked me what she should do, and I silently wished I had an easy answer; a rapid-response team that would parachute into her life and do all the work she should have been doing that somehow would retroactively bring the intervention that is proving to have such great effects when it is early.
The exchange brought home to me how many of these children are falling through the cracks every day. I told her about the local CARD program at FAU and told her to call. I suggested that the local chapter of The Autism Society would be able to point her to places she might be able to seek help. She may take my advice, and she may continue to do nothing.
There are many kinds of awareness. We tend to focus on the degrees of awareness that involve society-at-large not understanding autism or the alarming rate at which the diagnoses numbers are increasing; or the legislators who aren’t sufficiently motivated to address the public policy concerns; or the undiagnosed. When these groups do nothing, it is frustrating. But there are a thousand things vying for their attention.
The saddest are those who know, and do nothing. There are a myriad of reasons; I’m sure the counter clerk barely makes it financially, and Florida’s social services are not known for actively seeking new clients. But we all will pay a price for this treatment deferred, first the schools, and then our support services for the disabled.
None will pay so dear a price as her son, whose future is losing brightness with every day that passes.
Jerry Trowbridge is Executive Producer/Technology for The Autism Channel
Kathleen and I have been participating in April’s Autism Awareness Month online for four years now and arguing that acceptance is key. Awareness alone is meaningless. We’ve collected and edited this year’s writings below, our post for the Autism Blogs Directory, and our personal pieces for our own blogs.
As it is almost the month of April-and all things, “awareness,” Kim and I thought that we would bring you all up to date on the goings on at the directory.
Firstly, we are looking for blog posts on Autism Awareness month. What do you think about it? Good, bad, indifferent? We’d love to know your thoughts. If you would like to write or share a guest post on the topic-email us. We would enjoy sharing your thoughts. You could also just leave us a link to your post in the comments section in the comments section at the Autism Blogs Directory.
It has been a long winter. Both Kim and I have dealt with a number of ups and downs that have taken up much of our time. This has kept us from doing as much as we have wanted to on the directory.
As you know, we have been trying to help promote “The Autism Channel”-an exciting new channel devoted entirely to the world of autism. (If you have a Roku box-the channel is free!) We have mentioned them a number of times on the directory, and have even co-written a blog post together for their web page. We really appreciate all of the work that they are doing! We’d love if you would go on over and give them a look-maybe even a” like” on their Facebook page.
Spring is almost here and Kim and I are feeling a bit more rejuvenated. The demands on our time have considerably lessened. Isn’t it funny how things work that way? One minute, everyone wants your attention-and the next, it’s almost as if you aren’t necessary anymore!
As it stands now, we are getting between ten and fifteen thousand hits at the directory a week! We have come a long way since we first started this over three years ago. We want a place where everyone is accepted and included-a place where we can share our ideas-where we can find commonality…community over cacophony.
All of you are helping to make this happen-and we thank you. As always, we are on the look out for new blogs and guest posts. Please email us if you want to be included-or know of a blog that should be. It is our goal to make the autism blogs directory one of the friendliest resources for autism and disability blogs on the internet and to assist The Autism Channel in becoming one of the most inclusive places, as well.
~”You can’t teach an old dogma new tricks”~ Dorothy Parker
We are a regular family…Like any family, we have good times and not so good…times when we are all together and times when the ups and downs of living our lives scatter us in a million different directions. But, even when separated, we are always connected. I adore this family of mine.
As a mother, I see and raise ALL of my children equally. They ALL have the same rules-the same expectations set upon them. “Do your best-and most importantly-be who you are.” I have four kids. Each with their own very different and unique personalities-four wonderful kids…not three kids on the spectrum and one neuro-typical child..nor three “auties” and one “normie”…or any other “ie” ending cutesy kind of word (what is it with that anyway?). Four kids-four human beings that we are doing our best to grow into adults. Labels aren’t really necessary to us-unless of course we need services. Then they are of the utmost importance. Autism, other than as an explanation (to my kids) as to why things are sometimes more difficult or different doesn’t really mean anything to my children. They are kids, they are part of a family and they are loved beyond words. This is what they know. Sometimes I wonder (when I look at the world) if I have made a mistake in guiding them to think this way.
A few weeks ago, I had a person tell me that I was the best advocate that they had ever met in all their years of working in special ed. I tried to dismiss this…in fact it made me really uncomfortable. Believe me, I am not “the best”…not even close. There are too many days when I know I could be doing more…could be doing better. Those days when I just want to hang out drinking coffee…(and I do). Or, when I just don’t feel like making a call..or showing up at school (so I don’t). Days where I would rather read a book than discuss anything to do with autism (so I go to the library). No, I see myself as a regular parent. Doing the things (mostly) that a parent is SUPPOSED to do. I don’t need a title-and I don’t need (or want) praise. What I would like is for my kids to get all that they need without having to intervene. I do not think that this is too much to ask.
No, if anyone deserves accolades it is my kids. They are caught in a system-both in the real world and on line that is constantly trying to box them in. My children are more than their diagnosis. Some of them struggle more than the others. Not all of my kids may be able to live fully independent lives (as adults.) That does not make them less valuable (as people) then the kids who will be able to. Nor does it make me a failure as a parent-someone from whom they need to be “liberated” from. That is just the way it is.
One of my kids wants to be a teacher. Unfortunately, his lack of pragmatic language, and really, just the way he learns has caused him to be dismissed by many educators (there have been some wonderful ones-but not enough), administrators-and whole bunch of other professions ending in “ors.” He simply doesn’t fit into the system. So it is easier to just ignore him. To pass him on to yet another system-only to be ignored there as well. *sigh* And another one bites the dust…
Autism awareness month is almost upon us-and I sit here thinking about how unaware people really are. Soon my Facebook wall will be flooded with all sorts of “My autistic kids are great!” All my kids are great-so you’re preaching to the choir. .. Or the activist type of “I don’t stim-but when I go out with my friends, we flap in public to bring attention to stimming!” Are you kidding me? That isn’t activism-it’s theater. My son owns his flappiness-thank you very much. It is his and it is real. I wish that people would stop co-opting his behaviors to try and make a point. How can I teach him that it is important that he “be who he is”-when there are people are pretending to be who they are not? I wish we would instead concentrate on what is really needed. Services, supports, education and inclusion for EVERYONE on the spectrum-regardless of where they are on that spectrum.
Autism isn’t a month: it is lifetime. It isn’t one set way-it is many ways. It isn’t a light bulb or a tee shirt. Autism is all different shapes and sizes and colors and religions. It is different abilities and disabilities. But the most important thing autism is…is people. All different kinds of people. We need to respect that-to acknowledge it-to accept it. I fear that nothing is going to change until we do.
So, now that April is almost upon us and we are inundated with all things “awareness”… I think that I will just continue doing what I have always done. That is, to raise my children to do their best-and more importantly-to be who they are. That is more than enough awareness for all of us…
As everyone in the online autism community is all too painfully aware, April is Autism Awareness Month. What that means to the vastly different people in autismland is, of course, vastly different.
For some parents, it means going blue in a variety of ways, posting information about autism, raising money for autism organizations, attending autism-related events. For other parents, it means boycotting various organizations. For some it means attending events but offering a message of hope and acceptance in the midst of the message of tragedy that brings in donations.
For some autistics, it means standing loudly and arguing against the awareness campaign, arguing that it as it is done by NTs trying to raise money for research for a cure, for treatments is HARMFUL to autistics. Awareness—there’s plenty of awareness that autistics are different and the rhetoric of pro-cure organizations who engage in hyperbolic speech about the tragedy that autism is for families is DAMAGING.
But, but…we’re just trying to help, the Autism organizations offer as a rejoinder, well-meaning parents insist. It’s the only thing we’ve got, they say (I’ve said)–it’s the ONLY THING here.
And they’re both right. So what do we do?
Non-profits run on donations, so raising money is what they do. And in order to maximize donations, selling autism as an innate neurological difference that needs different ways of educating doesn’t do the trick of maximizing the money coming into the coffers.
“By way of comparison, more children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined.* ASD affects over 2 million individuals in the U.S. and tens of millions worldwide. Moreover, government autism statistics suggest that prevalence rates have increased 10 to 17 percent annually in recent years. There is no established explanation for this continuing increase, although improved diagnosis and environmental influences are two reasons often considered…*Comparison based on the prevalence statistics of the Child & Adolescent Health Measurement Initiative”
I can guarantee the sign, though, will still simply say “More children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined.” The extended paragraph available on Autism Speaks’ website isn’t pithy, catchy, or terrifying enough to bring those dollars in, and the reality is that most of the people at the walks across the country don’t read the website.
So what does acceptance look like in the midst of the Awareness campaign? It looks like a lot of things.
It’s Paula Durbin-Westby’s Autism Acceptance Day and Month 2013 campaign, where she writes that, “Autism Acceptance Day is about embracing and cherishing autism and Autistic people. It is not about ‘just tolerating’ or putting up with us. It is also not about dismissing the very real difficulties that Autistic people face. Autism is clearly a disability as well as a difference.”
It’s different autistic bloggers with their take on what it means to be autistic and what April is like to them (see The Caffeinated Aspie and Drive Mom Crazy). It’s parents and allies offering positive stories to counter the tragic stories.
Acceptance means different things to different people, just as awareness does. Acceptance, to me, means letting that diversity of thoughts wash over me, taking into account other people’s perspectives and acknowledging that each of us sees the world through our own eyes, that the diversity of voices found on the autism blogs directory is good, desirable, necessary.
Acceptance…I don’t want my community to just be aware of autism. Autism Awareness? What about Autistic Awareness? When the month is run as a way to offer scary numbers and stereotypes, what have we really done? Why isn’t this a month about celebrating autistic individuals in their diversity and their inherent value?
Why isn’t this month about accepting that we are all different, we are all unique, and that we all have value? We all belong here, in our communities, in this world, and should have the support we need to achieve our potential?
It shouldn’t just be about Autism, either, but about all our beautiful minds. But that should be every day of every month, shouldn’t it? Acceptance isn’t one day, one month. It’s every day, every month, every year.
Acceptance should be of the totality of our experiences, the reality that some individuals have greater issues, greater challenges and face greater adversity. Acceptance of those individuals means not standing by and doing nothing, but working to create a society that embraces diversity and supports it by putting into place real safety nets, resources that help all individuals find meaningful work, whatever that looks like for them, creates the most autonomy possible and safeguards against abuses for those who need assistance
Acceptance is messy. It is noisy. It is different. It doesn’t mean doing nothing. It doesn’t mean merely tolerating others. Acceptance is listening, empathizing, embracing, forgiving and flexible.