There is an article floating about from HuffPo about things that an Autism parent will never say. (You can see it here.) At first I didn’t really know what to make of it. I still really don’t. In the article it talked about how stressful raising an Autistic child is and how lonely. It said parents are peacekeepers from everyone to the family to school to complete strangers. It claims we are isolated as parents of Autistic children. It talks about hurtful comments.
It gives the impression that it is all inclusive, that all parents feel that way.
Maybe I don’t have guilt over meeting my son’s needs because I only have him. I am able to devote my time to him without “worrying” over “unfair” treatment to siblings. My issue with this claim is really simple: empirical research suggests otherwise. Research shows that NT siblings are enriched by their lives with their SN sibling, not hampered by it. They are more open and understanding of those who are disabled and more likely to help their peers. They also harbor no ill will towards their SN sibling for any reason. Imagine that: NT siblings of SN children RECOGNIZE that they are simply different in what they need and support how things happen at home. They get it and understand it. They also often grow up to help support their siblings in their adult life, making sure they have what they need. So, why would parents need to harbor this “guilt”?
I’m not a peacekeeper. I don’t try to make everyone happy nor do I care to. I don’t have the time or energy for that. Frankly, I don’t give a rat’s arse what some stranger in the supermarket thinks of us. It doesn’t really affect me if they are that shallow and judgey. We don’t know them. It’s a reflection of them and their character, not us or ours. Our life will go on as usual. I don’t “try not to look bothered.” I’m NOT bothered. I also will not be a peacekeeper at school. That’s just straight up push-over nonsense. I will not allow ANYONE to walk all over me. I will not appease them to make them happy. It’s their task to make me happy. Plain and simple. If your school isn’t making you happy, get a lawyer, learn your rights. I also don’t try to keep peace in my family or with my friends. If they can’t respect my views and how I do things, then we will spend our time with someone who accepts us as we are. We won’t be run over by anyone because they are “offended” or upset by something we do. (Thankfully this isn’t anything I really have to deal with.)
Maybe that author is isolated, but I sure as hell am not. You see, I put effort into my relationships with family and friends to maintain them and keep their value. Do I compromise myself in the process? No. Just read my last paragraph. For every one person who has dropped out of our lives we have gained 10 or more who are more than happy to share our lives. My friends and family have all done what they can to learn about my son so that they can support us however they can. We have some real people of value in our lives. I have also found my way into a larger community of people who share my experiences and are also raising an Autistic child (or 2). I have never felt isolated. I never will. I also don’t like the author’s assumption that my son isn’t part of the social world. He has friends. He loves people. He’ll chat the ear off anyone he knows. He plays with and shares interests with his friends at school. We are also very close. We are not “isolated” as if we are two strangers living in the same house. My son will find a way to talk to me. Communication is not always speech. He’ll write. He’ll draw. He’ll create. He tells me everything. Sorry, no isolation or lack of social interaction here.
Do I hear stupid things in regards to my son being Autistic? Sure. But it’s a teachable moment. Education is the single most powerful tool in the world. I also hear hurtful things about me, my parenting, and even my weight (how I need to gain a few pounds, for the record I’m healthy and fit and at a perfect weight). I get assumptions all the time about how because I’m deaf I should be dumb. Have I heard, “He doesn’t look Autistic…” You betcha. It boils down to the ignorance (meant by the true dictionary definition) of the person making the comment. They simply do not know or understand.
Is raising an Autistic child stressful? Sure. Just look at how we are treated. Look at how anyone with a disability is treated. Time and time again, day in and day out, we are treated like we are less than human, not worthy to be alive or tended to. We cannot get the help we need, the services we deserve. But that doesn’t mean it’s unbearable or too much to handle. I don’t think raising an Autistic is that hard, frankly. He’s just another kid. (See here.) Able and capable of doing what all other NT kids can do. We just do things differently. Our routines are different. Our needs are different. It certainly isn’t this down-in-the-pits, oh-woe-is-me, horror.
I do not worry about the future. My son will be just fine. He will live where he chooses to live, be it here or his own home, doing whatever he wants to do with his future. He is well loved by so many. Since we are not isolated in any way, socially or geographically, I have no concerns over anyone being around to lend him a hand when he needs it. This holds true whether or not I am here or not. I know he will be ok. I have confidence and faith in him and our circle. After all, we started the foundation to his own self-determination long ago. The seeds of self-advocacy and independence are well planted. What do I need to worry about?
We don’t "suffer" anything. We enjoy life. We are whole, complete, even content. Is it really that hard to believe?