This week I saw news about many tragic accidents that killed, injured and hospitalized people. These accidents were due to weather conditions. Although the Police did ticket a few for going to fast for conditions and some other minor infractions in my opinion they did not cause the situations. Given the horrific winter weather this year this fictional scenario could have happened in any state. If the story ended here these were tragic situations that would have injured and altered lives for years.
What happens next in the preparation for memorial services is what we call arm chair quarterbacking. Why didn't you listen to weather news? Why did you take that route? Why were you going so fast? By far the worst, Why did you swerve left? These blame drivers and where there was a loss of life add insult to injury that will never be forgotten. Why do we do this? When we do, we hurt our friends and loved ones again. After experiencing some of these comments it got the wheels turning how many times and different ways does the families dealing with Autism see this? Most of the time the public have no idea how they insult, injure, push and turn the knife deeper.
The list of insults grows everyday. I do not know of any family that has not experienced some of these. To understand, manage, and write about some I have divided them into seven categories. In no particular order: 1. Social Situations 2. Things we say to ourselves / Spouses. 3. Government propaganda 4. Educational environment 5. Medical Establishment 6. Relatives and Friends. 7. Community Politics. I am sure as we explore this topic there are more. I will briefly touch on a few that I see play out often, in hopes to comfort the old guard and warn the new to ASD diagnosis.
Social Situations: We live it, hear it and see it everyday. Those looks, comments and whispers in the grocery store, at church, restaurants or waiting in line. It is crazy, but you will hear comments from people you don't even know. Trust me overtime it does get easier. In the last decade people have learned a lot. New focus on Bullying and general behavior has removed some the poor treatment but there are still many ignorant individuals. Manage your energy. If I could go back to my first few years after getting the diagnosis, I would tell myself not to let those comments ruin my day. I would also say live, learn, teach, and grow but protect yourself. It is ok to ignore the ignorant sometimes. You do not have to educate the entire world all the time.
Things we say to ourselves and Spouses. I think this is one of the toughest to deal with. Many times this is where we echo something that was said or we start believing the ever expanding landscape of media propaganda. My advice here is be kind to one another. It is easy to kick and blame yourself. You will hear this often from the OG (Old Guard) Autism is a marathon not a sprint.
Government Propaganda - Many times this falls into trusting and getting our hopes too high. A young energetic man from outside the beltway promising if elected President to put in place a National level coordinator to deal with Autism. This ASD Czar would have power to effect real change. An Inter agency coordinating committee, a hearing of Congress, a promise of researching the Somali Minnesota anomaly and the list goes on. All giving lip service to prioritization, urgency, and action but yet nothing happens.
Educational Environment - I think most of us with school age children have dealt with this. 20 people in a room to develop an "Individual Education Plan." I am pretty even keeled but I recall so many emotions and residual nightmares from this experience. Sounds great in the room but sneak into your child's classroom and things look a lot different. Constant pounding of the save money drum beat from administrators. Really digging into this one will take another post or maybe a book or two. My tip to new to Diagnosis...get advocates.
Medical Establishment - They can say what they want but the state of Autism Medical Practice for the General Public in 2014 can be summed up like this. 1. We don't know 2. Take an iron pill 3. Get your shots 4. Have a great life. 5. Pat on head and push out of office. The list of things physically wrong with my Son goes on and on, yet this is all I get? Then when I dig deeper insurance will not cover therapy? This is an area again, where we have made a dent but we have lots of work to do here. Advice: Always get a second opinion. Get a mentor. Generation Rescue maintains a great list of Rescue Angels and medical professionals who care
Relatives and Friends - You will go through many emotions here. It seems like they try but protect yourself by being prepared. They will make hurtful comments. You will lose friends and chances at social situations. Many times you will be passed over when it comes to parties, play dates, and social situations. You will hear things before you come around the corner. The world still does not understand Autism. My advice in this category is to educate a little but look after yourself a lot. That means respite. Separation from negative people. Hold your head high and march to your own music.
Community Politics - Players as I see it: Here you have Autism Speaks - Mission Awareness Advocacy Research. Bio Medical Recovery community. - Mission Healing those in need, Respecting everyone, and educating about ASD Causation. Happy Parents - Mission Survive Neurodiversity - Mission Respect. They believe Autism is a gift, difference and part of evolution. Broadly speaking most of us fit into one or more of these categories. Name calling and bad playground behavior can be seen by all. I believe the Government through media and establishment encourages this fracturing of the community. I still dream of a day of unity but have recently become more cynical due to the venom spouted by all groups. Newbie Tips - If you venture into this area strap on all the armor you got and always have backup on call. I am available 24/7 on twitter @TannersDad
I am sorry I do not have magic answers. I did not generate this list to add insult to our loved ones injuries. I know in review, I have just scratched the surface. I am surprised to find out how raw and painful some of these still are. I hope and pray in some way that by being armed with this list and the ones readers add in comments, we become stronger.
I would like to see us control the situations. Call the bullies out. Remind the politicians that promises operate separate to circumstance. Educate the ignorant and defend the new families. Play a little nicer with each other. I would love to hear your list. Tell me how you have dealt with the attackers. I would love some more tips and tools to get through the day.
Tim Welsh, is one of the most active and influential Parent Advocates for Autism. Avid Speaker, blogger, and Tweeter (@TannersDad). Tim works to build unity within the Autism community, Gain Insurance coverage reform, End Restraint & Seclusion, Advocate for services, prevent wandering and much more. Tim & his wife Cheri have one son Tanner (16).
“I have a son he has autism, but, I also have dream. I dare dream of a world where profound regressive autism is not only treatable, but is also preventable”