When Autism Awareness Isn’t Enough

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April 1, 2019

Today marks the beginning of another Autism Awareness Month. And, once again, I’m torn by some very complicated feelings about this designation.

We’ve been in this autism world for over 18 years now, and like every family in our situation, we are aware of autism every single day. Every time we can’t understand what our daughter is trying to tell us, we are aware of autism. Every time she has a meltdown, we are painfully aware.

When my children were small, I was very excited about Autism Awareness Month. I went to the Rose Bowl and marched for a cure. I enthusiastically educated others about autism and it’s impact on families, even though as a parent newbie, I was pretty uneducated and inexperienced myself (thank you to those of you who listened and were kind to me back in those days).

But my feelings have greatly changed over the course of almost two decades of autism awareness. I’m no longer marching for a cure, because I don’t think a cure is necessary. Autism has always been with us, always will be with us, and we are a richer, better society because of neuro-diversity.

My children don’t need to be fixed, and autism doesn’t need to be eradicated. My friends with autism are some of the kindest, most caring people I know. One of the biggest lies is that people with autism don’t feel empathy. Because I have seen the deepest empathy and love from my friends with autism. They may need help in learning to express themselves, but I have no doubt of the depth of their feelings.

So many on the spectrum struggle with communication, with regulating their feelings, with interpersonal relationships and in various other areas. They may need help in learning to navigate this world, how to be safe, and how to best take care of themselves. And in some cases, they may need lifelong help and support.

And this is where I feel that all this autism awareness has let us down. Because I’m not sure that there’s anyone who’s no longer aware of autism, but I see very little practical support that has been given to individuals and families after all of these years, and all of these millions of dollars raised.

Parents are still having to fight for funding for therapy, still having to fight school districts for supports that are mandated by law but are being withheld, and still having to fight for kindness and understanding while out in public.

My daughter is still often treated by medical professionals who refuse to look past her autism and see her as a whole person. I can’t tell you how often I’ve been told by doctors, nurses and therapists that I need to accept that “This is how an autistic person acts. You need to get used to this and accept her.”

It shouldn’t have taken nearly ten years for my daughter to have been correctly diagnosed with gastrointestinal disease. It’s absolutely unacceptable that her Turner Syndrome went undiagnosed for 12 years when most girls are diagnosed before the age of 2.

It took 13 years to find a doctor who agreed with me that if her “behaviors” stopped when pain medicine kicked in, they probably weren’t “behaviors” but a reasonable reaction to a physical condition. And when she began to be correctly treated for chronic pain, we were actually able to see what was “behavior” and what was excruciating pain, and how to help her manage both.

Millions, and possibly billions, of dollars have been donated to charities to help those with autism, and yet I personally only know of one family who has received help from any of them. Where are those dollars going? Research is great, but we have millions of people who need help in the here and now.

Autism awareness has gotten us many charities that have raised millions of dollars, provide inflated salaries to the “executives” who oversee them and haven’t really given the autism community many tangible results or practical help. And it’s very disheartening.

So in this Autism Awareness Month, I would ask you to be aware. Please be aware of the families and individuals around you who are struggling.

Perhaps offer to donate to the legal fund of the family who’s fighting with their school district and paying thousands out of pocket to attorneys and advocates to get their child what they should have already had.

Ask an adult who’s living in a group home and trying to make it on their disability pay if they need groceries or toiletries, and help them out. Maybe buy more “chewies” for that child who always needs something in their mouth but whose family is struggling to keep up with the demand (those things wear out quickly, because chewing).

Offer to bring dinner to the mom who posts on social media that she’s been up all night with a child who hasn’t been able to sleep for the last 48 hours. Drop a card in the mail to let someone know you’re thinking about them.

One of the greatest encouragements to me in the last 18 years is a family that gave my family a red cape, and told us that they see our struggle and they honor us for fighting for our children, and they honor our children for their lives. It’s so incredibly uplifting to know that we’ve been seen and acknowledged.

Most of all, don’t look away when you see someone different, whatever the reason. Offer a hello or a smile. Offer an encouraging word. Because I think we need to move past Autism Awareness, and put our awareness into action.

 


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