I read an article today from a fellow autism-mom that made my heart sink. I don’t know her personally and I’m sure there were reasons for her post, but regardless, it made my skin crawl. It hurt me and it angered me. I really don’t want to encourage anyone to read it, but in order to get the point of my feelings you may feel the need to skim it here.
I couldn’t just let it be. All the high-five’s and kudos she was getting from other autism mom’s and family members wasn’t the way I felt at all. And while I may be in the minority, I had to tell her how I felt. I did send the following to her, privately, and as of this posting time I have not received a response. I’d like to share it with you now.
Hi Shanell. We have not communicated before although I have been following your page for a while (I don’t comment a lot on pages).
Please understand that as a fellow Mom who lives with autism in my world I respect every word that comes from your mouth (as I hope you would do for me). I must say, however, that today I did not agree with you. Today I shed tears of hurt, disappointment and shame when I read your article titled ” Somebody Living with Autism Wants You to Read This”.
Allow me the opportunity to explain. Autism has been a part of our life for 18 1/2 years. My son, Matthew, lives with aspergers syndrome. We did not hear the word ‘autism’ until he was 8 years old, although we always knew there was something. At first, we attributed his ‘quirkiness’ to being an only child. He didn’t know how to play with other children because he didn’t grow up around children his age. He was thrown into a world of adults from the get-go. He was an old-soul in a young body. When he started school he was happier by himself, he became agitated when he was asked to share, he didn’t care about ABC’s and 123’s; he was an outdoor’s boy who just wanted to explore. He fell behind academically from the beginning. At first he was diagnosed with ADHD and thankfully, a mild medication allowed him to focus and get through the remainder of his school year. There were still concerns surfacing the following school year which were answered after a series of psycho-educational testings. A nonverbal learning disability showed us why he was having issues with printing, fine and gross motor skills and transcribing. Modifications and adaptations to his curriculum helped but there were still yet many unanswered questions. Privately, he was diagnosed with ASD, specifically, aspergers syndrome. He was in grade 3. What the heck was ASD? I knew nothing about it, I knew no one who lived with it and all I could think of was “Rainman”. That was my introduction to autism. I was alone and afraid and angry.
To say I lived, breathed, ate and slept autism from that moment on was an understatement. Not only did I have to educate myself, my husband and my son but I also had to educate those family members and friends closest to us. We were it. We were the only ones in our circle to have autism affect us. No one knew anything about it. I made it my mission to learn everything I could and then it became our way of life, but not before many trials and tribulations (some of which we all still live with to this day).
My parents (my father in particular) were very old school when it came to children and disciplining them. My father had a hard time wrapping his head around Matthew and his ‘quirkiness’ and then accepting the fact that his ‘quirks’ had a name. It was hogwash and he just had to be disciplined. I searched and I searched and I searched for something – anything- to be able to show my father to help him understand. It wasn’t easy. He was a hard guy to sway. However, eventually I did find an article and from the moment I started reading it, I knew it was the one for him. It was specifically for grandparents and I only wish now I had saved it. He got it. He finally understood that we were not allowing Matthew to behave in a certain way or that he just needed a good talking to. My Dad finally got that Matthew was this way because that’s the way he was. Point blank. It wasn’t a bad thing, it wasn’t a good thing, it didn’t make him any better or worse than other children, it just was. Period.
Is it that easy with everyone who doesn’t understand? Of course not. Are there those who are ignorant (in the negative sense of the word) and who are unable to understand the voice of reason and education? Of course there are. There are no amount of articles, no amount of statistics, no amount of educating that will enlighten them or make them understand – and that’s because they are closed minded individuals.
We want our children to be accepted. We want them to find their rightful place in this world and we want for them what any parent wants for their child.
We don’t want them bullied, we don’t want them ostracized, we don’t want them disrespected and we certainly don’t want them to be made to feel as though they are any less of a person. At least I don’t want that for my son.
Why was it ok for you to feel as though you could bully, ostracize, and disrespect another human being today? I know your article didn’t specify anyone in particular, but even so, in general terms, why do you think it was ok for you to do what you are so set against others doing to your child?
In my mind, every good article, every good, positive form of advocacy that you have shared was totally negated today by your harsh words.
Yes, we all get frustrated, yes we all get angry and want to bang some people’s heads up against a wall and yell at the top of our lungs to stop being so mean and cruel and disrespectful but to call out a population today the way you did that will never care anymore about Kate or Matthew or the millions of others that we stand beside who live with autism did more to hurt you (in my opinion) than it did to help Kate, Matthew and all the others.
Sure, there are oodles of people on your FB page and on your blog applauding your words because they too felt the way you spoke of hundreds of times and are thrilled that you lashed out because the people you lashed out on are the scum of the earth because they couldn’t care less about ‘getting’ our kids or the lives that we live. And at first I thought “Wow, she’s having a bad day, what a shame.” But then, the more I thought about it the more upset I got.
What did you accomplish today? Did any of those vile individuals message you to apologize for their ignorance? Did they offer to learn more about living with autism? Did they offer to spend time with your family and understand the world according to Kate? Did you feel relieved and like you proved something by attacking others with you words? I’ll leave that for you to answer, as I truly have no idea.
We all deal with things our own way and I’m not saying your article today was right or wrong for you. It was obviously something that you felt you had to do. I just wonder how many others out there read it, like I did and thought it was nothing more than hypocrisy.
Your article did do something positive for me. It showed me that the way I advocate for those living with autism works for me. It showed me that making another human being feel belittled and “less, not different” is not the way I want to live my life or show my son how to deal with things. I’m thankful that when Matthew reads my blog in years to come I don’t ever have to worry about him asking me why I was mean to those who didn’t know any better. I’m thankful that I can continue to advocate in a positive light and after many years of dealing with ignorance that I finally realized that those people will not change regardless of what way I try to approach them.
So, while at first I shed tears, as I finish these words I realize that I shouldn’t shed tears, I should just continue to do what I am doing. I truly hope you will get to that point sometime. It’s hard with a young child, and although the teenage years pose a whole new set of issues, I am confident that Matthew is finally finding his way in the world and making many of those paths as he travels them.
I wish you well and look forward to continuing following you and your family on your journey, I just had to say my piece even though it may not be among the views of the majority.
With much respect,
Until next time…