I know that we have just started the month of April. For many of us who live and breath Autism 365 days a year, this month is supposed to be Autism Awareness Month. During this month the sea of the "Light it Up Blue" light bulbs will be present at every turn. While most of us are grateful for the acknowledgement, many us are just happy when that acknowledgement presents itself during the rest of the year instead of just April. A lot of us are hardened to the fact that a vast majority of the population still has no idea what autism actually is or what it is like to have it or love someone who has it. Every year we all sit back and watch people go nuts with painting the world blue. This year, however, I am not inclined to do so. It comes down to two factors. The current political climate and Autism Speaks.
Let's start with the first one. I honestly thought it was a joke when I read in my international news that the White House was going to "Light it up Blue" for World Autism Day. Seriously, I did. Now lately I have been trying my damnedest to keep my mouth shut when it comes to this administration, but a very audible *Snort* came out of my person when I read that this morning. APRIL FOOLS! I am for the life of me trying to wrap my brain around why this current Administration wants to light the White House up blue when they have just spent the majority of the POTUS's first 100 days in office trying their hardest to get rid of just about everything an autistic child ( who will someday grow into an adult) will need to succeed. Education, Medicaid or Medicare, Social Security, housing, or how about just resources. Education. For many of us parents, we were shocked when the woman who hadn't a clue to what IDEA or FAPE was, got the job of Secretary of Education. SHOCKED. A woman who is not qualified to even enter a public school, let alone run one, is now in charge for the education of our special needs students. Oh yes they are very aware, so much so that the POTUS calls it " The Autism"and or " The Horrible thing". Medical. The appeal of ACA. Now listen I get that it wasn't prefect, even Canada's healthcare system isn't prefect, but at least it gave people something, rather than nothing. For those kids who needed things like ABA, speech, or OT, when they either couldn't get it school or they need extra, ACA covered that, again not prefect, but it was something. To successfully appeal it, and not having anything to replace it, is a very dangerous road to be on. So let's talk about the replacement, AHCA or American Health Care Act. What does that mean for people who have autism. In 2014, Medicaid spent approximately $151.8 billion on support services for seniors and people with
disabilities — 53 percent of which was spent to keep those receiving
support in their own homes rather than in nursing homes or institutions. So when there was the implication that Medicaid was going to be more state run with less funding under this new Healthcare act, a lot of us wondered just what that meant for people with disabilities. A good number of us will have grown children, that some might need group homes or some might be working those minimum waged jobs, who then will not have the government's support nor anything else. A lot of us were made to wonder just what will happen to our children, when things like Medicaid and Social Security aren't going to be there to help our grown children when we have long since passed on. Now I get that the average parent might not worry about those things, but this one does. I do have a child who has an Intellectual Disability, one that even with the best foundation, will still need help as an adult to live his life. These are just a few things that this Administration has done to try and erase my hopes for my autistic children's futures. I don't think I need to make note about the POTUS' making fun of disabled persons. And before I get the "Well Obama did it too..", yes he did. Once and he apologized for it. I have yet to see an apology from this administration for mocking a disabled person or calling a deaf woman"Retarded". Again very laughable that the White House is going to be 'promoting" Autism Awareness. It's very tone deaf. At least if you are going to do that, have some education about what Autism is and what the rates mean, so you don't have to ask a special educator that question during a sit down meeting with teachers.
On to Autism Speaks. Listen I get that they are a nationally organization that is supposed to be at the forefront on Autism and everything that has to do with Autism. Since my daughter, who will be 12 soon, was diagnosed with Autism, I have learned very quickly that Autism Speaks doesn't speak for myself, my daughter or my son. While they promote their "Light it up Blue" Campaign, the whole "people need to be aware", most of us who have read the rhetoric and have found that they, themselves have yet to fully accepted it. Finding a cure is what most of it states. While Autism presents with some interesting twists and turns to one's life, it isn't something that defines that person. Autism is part of that person. There is a lot of people who are on the fence about their feelings concerning Autism Speaks. Some will say that the organization does great work in spreading awareness during the month of April, which undeniably does, but the question has to be asked is Does it promote Acceptance? For most autistic adults, acceptance is something they want. I mean doesn't everyone want that? To be seen as we truly are, without judgement? So when you have an organization that promotes the struggle and the pain Autism causes, you aren't really accepting it. The other issue with Autism Speaks, is the leadership. Some have pointed out that there really isn't much leadership with people who have Autism. It would be like if there was a group that promoted Women's health, but was run solely by men. See what I did there? Just like the other big organizations that promote "Awareness", one needs to take a step back and really look at what exactly is being promoted and how does it benefit those it's supposed to.
April has always been a mixed bag for me. This year, especially, I feel the Autism community has been hit hard. It isn't even just the Autism Community, but those who are unique. So while I am amused by the White House's choice to "Light it up Blue" despite all the challenges they have brought forth for us and whole " Be Aware of this and Be Aware of that" campaigns, I urge you all to take a stand. If you have loved ones who are on the spectrum or you are on the spectrum yourself, please pay attention to what the government is doing, with regards to your rights. As for April is Autism Awareness Month, we are all aware, but are we all accepting? Are you going to support local autism organizations, instead of the big money making ones? Are you going to accept that the child sitting at the table next to you in a restaurant who is stimming away because the lights are too bright, is just trying to self regulate or is it going to be the reason you are rude to their parents? Or are you going to mock the adult that stand before you having a hard time asking a question? It has always been about Acceptance, as the world is already aware.