Supposedly, whenever I see an ad regarding Autism, it’s always “talking to me” or telling me I “need to pay attention” in some way. Yes, I realize that this is for those who are not in touch with the challenges of Autism and that it’s meant to create conversations, but really, when I see the amount of associated products being sold leading up to April, it leaves a bad taste in my mouth. Certain home improvement businesses advertise the selling of a certain colored light bulb so that there can be a great showing of that color on a particular day. While I think that it’s beautiful to see so many people coming together to say, “We’re here to stay and we need your attention!” we are missing so many opportunities.
Our children are thriving, more than ever. There are more programs emerging every day, there are many more pediatricians and clinicians dedicating themselves to recognizing and encouraging early intervention. Schools are learning (in my daughter’s case, fighting against) to include the diagnosis in an educational plan that provides modified curriculum that enables children all over the Autistic Spectrum a chance to succeed and thrive in their home school setting.
I think what we are doing is putting Autism into a box. A box of four weeks, certain colored light bulbs, a few commercials (I don’t watch TV, so I just know what I hear) and some products that people generously donate a portion of their sales to research. It’s a start, but who is this month profiting? There are vague references to “proceeds being donated to fund research” or to a certain organization or entity involved with “something something” Autism. It’s frustrating. Sure, people have said to me, “Ok, if you feel that way, then why don’t you speak up?” or “Then be the change you want to see in the world!” and other such inspirational words. That would be great. As a widow with two at home with Autism, a school system that’s fighting me, exhausting me, a failing child due to this, limited income due to having to be home to fight the school system and take my children to all their appointments, a seventeen year old son graduating from a non-public school for children with special needs and ALL services being cut since he is graduating, there really isn’t a lot of time for a start-up. Maybe one day I’ll have some free time and things will change, but for now I have to sit on the sidelines, frustrated.
Oftentimes, people come to me and ask questions. While I wish I had more opportunity to be a part of the system, I am often locked out due to the fact that my almost two decades of experience with Autism mean nothing to the world of employment without a degree. Sure, I’d love to go back to college, but not everyone can. I’m not angry or bitter, just frustrated. I consider myself experienced and have a lot to offer in the way of raising awareness. I’ve had a million ideas over the years, especially educating schools and first responders about what to expect from children with varying degrees of Autism. I’ve wanted to be a first contact for families dealing with a diagnosis. I want to be a first voice for those who are scared, confused and yes, even devastated by the diagnosis. I know now, this far into the world, that Autism can be a unique experience and my children are wonderful people and growing into amazing lives, however, there are many very challenging and difficult times I’ve endured. I can sit back now, seeing my son starting to mature and make honors, pose for his senior pictures, plan his senior trip and all the wonderful things coming his way. What I can forget is that there was a time when he was incredibly out of control, spiraling into rages, being taken from the house in restraints and placed into an inpatient facility. I can’t forget that my daughter is failing, existing in a school not willing to work with me, seeing her fail and not having any resources to get legal counsel and get her the help that existed when my son was younger. Autism is EVERYDAY for those of us living with it. There isn’t a four week period every year when we can sit back and turn on specially colored light bulbs and sing Kumbaya and hold hands. A snarky thought? Perhaps, but I have to be realistic. There isn’t money coming in for my autism research. I have to make do with what I have and what I can find. I sit here after eight weeks of trying to get through to the agency that is supposed to be helping my son with training and schooling. Even today, I have to go to the school because of something I had to really fight for that I was lied to about and tricked.
I’m very grateful that Autism is really out there and things are moving in a positive direction. I’m thrilled to see such wonderful organizations out there doing amazing work. Recently, a very popular agency in my area sponsored an evening for hundreds of families to visit the aquarium here. I’m so happy we got to go as a family. A lot of people, just not people in my situation, can’t drop over $125 for a family of four to go there, so it was something I truly appreciated. The money had to come from somewhere and maybe one of those fundraisers paid for it. So, it’s not that I’m “against” the things that are being done, I am just concerned about the millions funneling to…where? We hear an awful lot about awareness, but there is still so much to learn. After the hundreds of campaigns, billboards, TV commercials, I still have people who judge me, misunderstand my children and refuse to even acknowledge it in my daughter’s case with her school. There’s a lot of opposition out there, misinformation and a long way to go before there is really any true awareness of anything, let alone an acceptance. I think that may just be the word I’m looking for. I think awareness keeps people with certain challenges apart. Let’s be aware of these “different” people walking among us. It separates them and keeps them apart from the rest of society. Let’s think about Autism ACCEPTANCE, every day, not just in April OK?