The Seeming Elusive Inclusiveness

Throughout history the special needs communities of the world have faced their challenges to reach acceptance and inclusiveness for hundreds of years.  It has been only through the growth of understanding and knowledge over the last forty years though the rate of this acceptance as psychologists and physicians manage to unlock various myths about what these special individuals are capable of.  While the world waited though, many throughout the course of the decades found their homes in some of the worst living conditions that have ever been seen.  Institutionalizing for years was usually the recommended course and most families without knowing any better sent their children off to live in sub par conditions into adulthood if they lived that long.  It was only in the mid-80's and early 90's where we begin to see a deinstitutionalization happen across the United States, (CIRRIE, 2016).  Even when my son was diagnosed at age three, I had a few educators with their archaic mentality who actually used the word 'institution' to me.  One person specifically told me that my son would not ever talk, be potty-trained, or function in public and that the 'best' case scenario would that he would not have to be institutionalized.  I could not even believe it and of course it didn't happen as in the next few years the prevalence of diagnoses grew and my other son was also diagnosed on the lower end of the spectrum (which was based on speech back then; however, since then the standards for that have changed in so many years).  

Even with the reality of what people on the spectrum are capable of and the advancements in interventions and treatments to aid our special sons and daughters to find a more functional role in the world there is still a stigma and a lack of general acceptance by mainstream society.  Autism parents are still working hard to gain this acceptance for our children and even ourselves as our parenting is often called into question by uneducated people who do not understand that our 'normal' looking children are in fact autistic.  This struggle has been hard on many of us, but where it really hurts us the most is when this lack of acceptance and inclusiveness eludes us even among our own ranks; there is even judgement from other autism parents towards each other.  How on earth can we ask for acceptance from everyone with typical developing children if we cannot even accept each other and our own children?  

I speak to dozens of parents, mostly mothers, on a regular basis because of the blog and my openness about the subject of autism, advocacy, and education.  It has become a greater and greater trend that many fear the judgment and comments from other autism parents more than from the rest of the world these days.  I am seeing a lot of blame, questioning, speculating, and severe cases of shaming occurring.  Why?  Because there are those so passionate about their child's successes, their own theories, and their beliefs that they become overtly aggressive when other parents do not accept or participate in this.  One woman I spoke to recently told me, "I used to be on an autism parenting FB page but I stopped because I found that there was enough judgement & negativity to make me feel uncomfortable." this isn't the first time I have heard of this and yet we as a community are asking the rest of the world to accept our lives and our children while we cannot accept ourselves? I am baffled by this logic or lack of it really. How can we possibly expect from others what we cannot accept those among ourselves?

As our discussion continued she then said, "I think it's the area that I am the most vulnerable so I just can't stand subjecting myself or my son to the judgement. I've never cried for myself like I have for my children but when I experienced being judged because of my children's experience...it hurt." I was hurt with her as we continued our messaging to one another; I have felt that pain that not only my parenting is being called into question, but that my sons are too. It isn't a good feeling at all, but I am a really strong personality in that I take that hurt and I decide to do something about it. After our conversation, I couldn't get her words off of my mind and as the days went by I knew that something needs to be said. I am not afraid to say it, whatever judgment comes, I am not afraid to say what needs to be said. So I am calling each of us out as autism parents.

Here is the thing: THERE IS NO ACTUAL SCIENTIFICALLY PROVEN CURE. Period. There is no definitive cause and there is no wrong way to parent our kids unless it is just plain old neglect and it wouldn't matter if the child was autistic or not because that parent would have likely neglected a typical developing child just the same. We are all doing our best and the fact is anyone who is openly bullying another autism parent or judging them, because they (who knows their own child best by the way) aren't following your parenting path with your child is wrong. It is that simple. Any behavior that is not supportive is wrong. We face so much discrimination, judgment, and harsh treatment in the mainstream world that we do not need it nor we should not be getting from each other. I believe in one hundred percent support and specifically make sure I tell each parent I talk to the same thing: I support you; I know you are doing your best and you are really doing an amazing job and I am here for you. An autism mom friend of mine said to me once, "We may not agree on the same things, but we love our kids just the same." It is the truth, we all love our children the exact same and we are all advocating as our parenting instincts and knowledge of our own children tells us to.

We cannot expect the rest of the world to accept our children and us as parents if even we cannot do it for ourselves. The common ties that bind us are love for our children and doing the very best that we can in a difficult and sometime seemingly impossible set of circumstances and I would implore you all to just give each of us a break. We have much bigger fish to fry as we work ahead to help make our children included and accepted by the rest of the world.