I have made no secret of the fact that if I could take autism away from my sweet girl, I would. I have made no secret of the fact that I do not think all the greatness of her would disappear if she did not have autism. And when I read the thoughts of some parents and some autistic people who are angry that myself and other parents feel this way, I am floored. I get sad, and I want to be given a different umbrella for my girl to stand under so that she can have the chances she deserves. I am floored that some suggest that we don’t love our kids, that we are hindering them in some way by feeling as if they need research being done for them to help ease their pain. These are the most ludicrous thoughts and statements I have ever read.
For those of you outside of the autism community, for those just looking from the outside in, I want to explain, because I think you might be confused as to what I am talking about and what I mean. It is like reading an article on something you are in favor of, or a cause you are passionate about. Then you go to the comment section. And some people take their freedom of speech to a whole new level. They crush your cause with accusations and lies. And in doing so, they create divide, and now a halt in the progression of helping your cause, because people who are not living it, now feel the need to weigh and measure.
I follow a lot of fellow autism parents and groups on social media. And every so often (more for those who have more followers) get shamed by certain groups for sharing their journey, their child’s journey, their story and at some times, their pain. They call us “ableist”. Look it up. We are not. In the short version they are insinuating that I and others are saying that my child’s and other’s value as a person is less than that of other people because of their disability. And outside of the definition of ableism, some of these people would even argue that my child is not disabled. Again, this thought is just mind blowing. My sweet girl is unable to be alone, to take care of herself, the list goes on….she is disabled.
From my perspective, the agenda of these people who shame parents for having feelings are minimizing my child’s needs. Your quest for only acceptance and for only awareness (which some people even hate this word…for the love) makes the need for outside the box treatments, therapies and yes the dreaded “C” word (a cure) obsolete and easily ignored. We need outside the box! Bottom line! Hate me for saying it, but I am not here to gain your approval, I am here for my daughter’s best interest.
I want to add this in as well. Putting myself in your shoes, as much as one can do, I do see where you are coming from for YOUR cause. But your cause does not fit my child’s disability. You are two very different people. You have the same diagnosis because you both scored high enough on an extremely broad test.
Which leads me to want to remind people that Autism by definition, which I am summarizing from various sources, is a developmental and neurological disorder that causes problems with communication, social interaction and behaviors. And this diagnosis comes from a screening and comprehensive diagnostic evaluation which if one checks off enough of the boxes will receive a diagnosis of autism.
Autism is not one diagnosis! It is a group of symptoms, behaviors, and poor communication skills and understanding. Autism is not like many other disorders. IT DOES NOT HAVE ONE ORIGIN. There are many genetic abnormalities that will cause one to receive an autism diagnosis. The genetic abnormalities will say causes “autistic like symptoms”, I have read several, which you have usually found out the autism before the genetic condition. Chicken before the egg. And even with a cause for some, it will still only be the autism that people see. They will not see the cause or want to find the still unknown origin, which many parents long to have, they will just see that they have autism.
I care to find out how autism happened. I want to know. I don’t just want behavioral treatments and medications to minimize symptoms. I want more. And I know with every fiber of my being that more will not come without the cause.
And then to add to it, once you get the autism diagnosis, you get this look like “oh she has autism” and we now know everything about your child by that one single word. We have now defined her by this one word, and we will treat her because of this one word. And this usually does not come from a place of no compassion, it is all that there is to know and to focus on now.
ALERT….here is something myself and those calling me and my fellow autism parents ablest might agree on (or not, it’s hard to tell), those diagnosed with autism are not defined by this one word. Let’s stop treating them that way. Let’s strive for more.
People diagnosed with autism are different from one another in a million ways. And I feel like we have handicapped the treatment by micro focusing on a small group under this enormous umbrella. Because I have surely not seen my child represented in the media, in movies or on your latest feel good special needs series. I have not seen the 11 year old, still wearing a diaper, with bite marks up and down her arms, banging her head on the floor for reasons the parent cannot figure out while trying to minimize the harm they do to their selves on my latest TV special.
So I am going to pose this question for all these thoughts, emotions and frustrations: Can we have our own umbrella? Can we break from each other and fight our own fight? Can we agree everyone does not belong under here and that research needs, the medical needs and the overall treatment for all of those under this umbrella do not match up all the time.
Because as I have said before, I don’t want to change anyone that doesn’t want change. I don’t want to alter your path. I am not questioning what an awesome person you are. In fact, I would rally with you for you to be able to be accepted the way you are. I just want someone to pay attention to my girl’s needs and so many others like her without making you feel like we want to take something from you. Because when that happens, you make it out to be like we are searching for something wrong. We just want to give something to our kids that they cannot ask for themselves. That will help them to be able to get on a computer and discuss with you how they are feeling. Because right now, you have a voice, our kids do not. They deserve one!
Lots of love,
I cannot imagine what this fight must feel like, to be forcibly included into a club you certainly didn’t opt into, and then to have to go up against those who should be the most understanding of the various layers that are autism. I am sure it’s exhausting and wearying. Keep it up, though, girl. You’re doing good things. Much love!
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I raised two kids who are now adults approaching middle age, one of them has multiple diagnoses, and is disabled as an adult . Both are autistic although in my day and their day nobody knew about autism as we understand it today.
I have been on both sides of the fence with a late diagnosis of autism for myself and late understanding that I was also raised by an autistic mother.
I know first hand the pain and struggle of raising a disabled child and wanting to help in any way we can.
You are not alone, extremists on all sides are not willing to learn or to try to understand another’s point of view.
I like to think that the majority of us as humans, ( all of thoseof us trapped between the extremists) are not like that.
Sending compassionate understanding and cheering you on, family always first!
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