So lets start with the facts. You have a cause. You love someone with Autism (insert other challenges here to make appropriately relevant). You want to help. You feel empowered in advocating for them, in doing something charitable, obtaining good karma, and your identity strengthens by being "about" something. You buy tee shirts, fundraise, "like" and post cool quotes and pictures on facebook, and even attend rallies and fairs... just make sure when you are posing for your pictures you don't push the people with different abilities out of the way! Accept them as they are and remember your goals are about making THEM feel better, protected, and progressive in reaching THEIR goals. Don't negate the fact that a lot of what you may not understand may be a part of their identity; something they want you to accept about them NOT something they want you want to change about them, fix, or take away.

It is very easy to think you are an immediate expert when youve read some brochures, gone online, spoken to a few parents, and attended a conference or two about "your cause". The truth is there are no experts other than the people living with their differences or challenges, you know, the ones you are working so endlessly to help... The problem is society tends to have a "fix it" mentality and doesn't always want to turn the mirror on itself.

I have spoken recently with several young adults with Autism/Asperger's about their experiences growing up with language challenges, sensory difficulties, intense therapy schedules, and many people "advocating" for them. I inquired about how difficult it is to exist in the workplace and deal with the allegedly "neurotypical" (NT) population. Some of the best points made are as follows:

  • Why force eye contact when you are talking? I don't mind glancing but long deep eye contact is another story. Truthfully I can concentrate better on what you are saying if I look away or close my eyes. When people listen to amazing music and close their eyes do they appreciate it any less?
  • I see people using appropriate eye contact and physical signals to express themselves all the time and I laugh because I know they are lying with their words and facts. What's the point of looking like you care if you are just going to manipulate people?
  • When I was younger and people would ask me questions I would be just about to answer, talking can take a while because even when I know the answer in my head I need to remember the right words and think about how to get them out in the right sequence, and I would get inundated with the same question repeated or phrased in a different way or someone would answer for me... I felt defeated and less motivated to talk... if only they would have given me a few more seconds.
  • My body was not completely mine, we had to build a lot of connections. When I was given a task to do people would move my body and do things (Hand Over Hand HOH) like I was a puppet. There are some things I really didnt know how to do and the prompts helped but people would just move my body like I wasnt even attached. If the project wasnt perfect I didnt care I just wanted the chance to do it myself.
  • People always wanted me to work with them, perform for them, show others what they taught me to do or how I was feeling better because of a new support, but it was(and is) rare for people to just spend time with me naturally. Simply, being present is hard for everyone apparently!

So, the point is this, we don't simply need to therapize and change the people we love and want to support! We don't need them to completely acclamate to our way of doing things. We need to help find their comfort level, their strongest abilities, and leave room for listening and learning from them about ourselves too! We need to educate strangers who stare, restaurants who ask parents to get their kids under control or leave, stores that won't hire people with developmental differences, and agencies that want to cut programs and funding that helps keep people moving forward.  Equal rights to the pursuit of justice and happiness are not luxuries, they are entitlements and we must not think that doing the right thing for others with special needs is an extra, they should have always been in place. Additionally, when forming groups to support your cause, make sure you are including, highlighting, and collaborating directly with individuals impacted. There is no room for assuming when it comes to these causes and we all know what they say about assumptions!

Remember, advocacy is nothing without acceptance!

About the Authors

Alison Berkley, MST

Alison Berkley, MST, is the Director and Co-Owner of the Emerge & See Education Center in New York City.

Amanda Friedman, MSEd, SBL

Amanda Friedman, MSEd, SBL, is the Director and Co-Owner of the Emerge & See Education Center in New York City.

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