Tuesday, March 18, 2014

The Purpose of Raising Awareness

April is Autism Awareness Month. April 2nd is World Autism Awareness Day.

Over my years of blogging my views on this have changed. The first year I was excited. I couldn't wait to celebrate my son, to share him with the world and for them to see how wonderful he is. I thought I could make a difference, change the world in 30 days.

The second year, I was discouraged but determined. Maybe my efforts online were wasted, raising awareness among the already very much aware because no one outside of our world really cares. It doesn't effect you until you live it, but I thought I could raise awareness in the real world, I just had to figure out what to do. and I saw how little the world outside of the online autism community really cares.

This year, I'm just pissed off.

I'm sitting here watching the same arguments that I watch every year- light it up blue vs the rainbow, whether or not the puzzle piece should be the symbol of autism, etc. Superficial bullcrap that means absolutely nothing, that accomplishes absolutely nothing. Every year we have this same issue and I have to shake my head at the absurdity of taking three entire meetings just to write a mission statement while never discussing the reason we're here. When are we going to get past the unimportant details and get to the reason we need awareness?

Bill McClellan wrote an article in the St Louis Post Dispatch about a woman named Carla and her parents and their difficulties in finding a place for Carla to go after graduation. Now, here's a place that takes the high-functioning vs low functioning argument and explains why there is a difference and why that difference is important. There are work opportunities for the higher functioning adults- sheltered workshops and such, but the county decided our lower functioning- or more profoundly affected- individuals don't really matter, they are not worth the investment. Now, Alex is only 11 but this matters to me a lot because, in addition to the young adults who are transitioning out of school every year with nowhere to go, Alex will be there soon. If there is no money today, how is that going to change tomorrow unless we do something now?

I know you are all familiar with Avonte Oquendo, the teen who wandered away from his school and was later partially found in a nearby river. I know you are all familiar with Mikaela Lynch, the 9 year old who wandered away from her home and was later found in a nearby creek. I know you are familiar with these children and so many more, more than I can possibly name. Every week I see new notices of autistic children who are missing from all over the country in my newsfeed. Every week I see parents who are devastated, begging for help.

Every week I see new stories of school abuse. The most recent one that comes to mind is Andrew Ashline. When it gets to the point that you aren't phased by stories about a teacher slapping an autistic child in the back of her head because you've heard worse more frequently than to make it common, there's a problem.

Every week there are stories of horrific bulling. My brother recently shared a story with me that I had been avoiding about 2 teen girls terrorizing and torturing an autistic boy because he was horrified by the story. All I can do is shake my head because our children face this every day. It's not always quite so obvious, but it's always horrific. Blue is one of many children and teens with autism who go to school and have to figure out how to deal with daily harassment on his own because the zero tolerance policy is bullshit. Our children are hurting, a lot more than you would expect are suicidal. I hear the stories and it breaks my heart. All they want is to be safe.

Our children are being murdered by parents who just can't take it anymore or parents who are just sick. I know you know of Alex Spourdalakis and Issy Stapleton. They are just two of way too damned many. The ASAN says it best in their thank you for the support in the March 1st day of mourning.

They are being dropped off and abandoned because their parents can't get them the help they need or get the help they need. The most talked about was Nebraska's Safe Haven Law. As of November of 2008, 34 children had been abandoned. All but 3 of the first 30 had previously had mental health care. On November 21, 2008, a bill was signed by Governor Heineman to limit the age of a child who a person can drop off at a hospital and not be prosecuted to the age of 30 days or younger. In 2011, 10 year old Benjamin was left to wander the hospital emergency room. In 2012, an Illinois woman was abandoned in Tennessee. Again, these are only a few of the many.

The schools don't want to help us. There are so many stories about fighting for services, fighting for a diagnosis, fighting for an adequate education that I couldn't possibly link them.

The organizations that are set up to help don't want to help us. The system is overwhelmed. Everyone in the system is stressed. There's not enough money. The excuses go on and on and everyone is saying we're doing everything we can do, there's nothing more that can be done.

When are we going to stop talking about how to raise awareness and actually do something that will help our children and adults?


  1. You make me want to start my own organization. You know where the money actually goes to families to help them pay for shit that we need instead of just "research." Trying to figure out now how to pay for a great training program that would ensure that Red would get a good job. Oh but it's in California...and where would he live? And how would he be able to afford to live until he actually gets the job! Oprah! Help!

    1. Thank you, Karen. Yes, the worries are endless.

    2. Autism awareness is pointless -- support for the families of autistic individuals is what is really, truly and desperately needed.

      I'm not so sure that a training program that is guaranteed to lead to a "good job" exists -- there are no guarantees in life and even NT honors students, who graduate with distinction, have a hard time finding a good, satisfying job that pays a living wage in this economy. Even excellent job training programs (usually) cannot guarantee graduates post-graduation employment.

      I do think there are great programs for young adults with disabilities... but they're few and far between, and reliant on employers willing to go the extra mile. My niece, K, is 25, has Down Syndrome, lives in South Carolina and has a job she loves (and has held for years!) as a result of a fab school-to-work vocational program for young adults in her county. K and a small cohort of young adults with various disabilities (her cohort had 7, including her, with mild intellectual disability, like DS or TBI) got training and the opportunity to do two 6-month paid internships with local companies --- and a Walgreens warehouse liked her so much they hired her full-time when she graduated. She's been there for going on three years, loves her job and makes well above minimum wage. Two of her cohort friends were hired by Costco after completing internships and have been gainfully employed ever since.

      With respect to the scary, scary wandering... it's horrific what happened to Avonte and his school should be sued, should be forced to figure out what they did wrong and to put in place measures so that it never, ever happens again. The school is basically responsible for Avonte's death.

      Some of the other wandering cases? Like Mikayla? It's tragic she died, but it was pretty irresponsible of her parents to leave her (she functioned as a 2 yo, according to news reports) in the care of her 8 or 9 year old brother. I live in NY and 8-9 year olds cannot babysit toddlers -- that's straight up child neglect. Heck, it's criminally negligent homicide if a parent leaves a 9 year old in charge of a toddler, and that toddler dies.

    3. Thank you, Katee. Yes, there are some great programs for higher functioning individuals with disabilities and Alex's school does a great job preparing their students for the workforce and teaming them up with programs but what is there for the young adults who don't have those skills? To go into a workshop, you have to be potty trained and be able to take care of your own needs. There are programs, not many, but some for the lower functioning individuals, what's missing is the funding to help them be able to access these programs and the training and support for these programs to be able to meet their needs. To go into a day program, you can't have behaviors that will make you a danger to yourself or others. Or, really, any behaviors that will annoy others. What about them? It comes down to funding and our county's statement that, "the Productive Living Board concentrates on people who need support to live independently, and that those with more profound issues are generally taken care of by the state," which can be found in Bill McClellan's article linked above. This needs to change.

      The school is responsible for Avonte's death. No argument. But, the schools need support as well. They need to be held accountable, but they also need to know how to prevent this from happening. They need policies, procedures, and the equipment and staff to keep our kids safe. That comes down to funding and parents pushing for a change before something tragic happens.

      Wandering... http://www.homestylemama.com/2013/05/wandering-when-prevention-doesnt-work.html

  2. I get you totally!! Funny, I felt the exact same way the first year, and last year as you did. I also feel the same way you do this year. We need acceptance, not awareness. We need action, not just words. I am just at a loss as to how to do it, I'll be totally honest. It perplexes me to feel so helpless, so I do all I can do, but it isn't enough. I just don't know what to do. But thank you, I wasn't sure if I was the only one who felt this way. I had planned on doing a blog post on the subject as well. Not the same as this one but more along the lines of stuff awareness, autism needs acceptance, true acceptance, not just token lip service.

    1. Thank you, Laura! "We need acceptance, not awareness. We need action, not just words." Absolutely.

      How to go about it is a little more difficult. What I am doing this year is searching out a need and doing what I can to help meet it. Alex's school needs a playground. I will do what I can to help his school get it. It's not a big step, but it's a start.

  3. I agree. I don't care what color ppl use to light it up. I try my best in our little town to raise awareness every year. I work as hard as I can to help local families in my support group, and this year, I have branched out to do a walk that will raise money for families in our area to better help their kiddos with therapies/wrap around services. I do what I can, and I wish others would too. I do feel though, that awareness helps to create acceptance. I think we are pretty much creating the awareness, but the acceptance seems to be the struggle. If we could all work together more, we would be a force to be reckoned with ;) <3

    1. Yes, thank you, Courtney! I don't care if it's light it up blue or color the world. I'll do either and be fine with it and I really couldn't care less which one my neighbor's doing. Working together to do what we can is absolutely the point. As a group, we could rule the world, lol. Now.. how to get everyone focused...?