Autism Acceptance and the General Public's Perception of our Children
We have all fought the fight to get our children where they are developmentally. Whether that be mildly functioning or severe, we love them just the same. We fight for them just the same. Sometimes that fight isn’t actually a fight to overcome something with your child. It is instead a fight to get the public to understand that our children are each different and worthy of dignity in their differences. Many times over the years I have dealt with pure ignorance from the general public when it came to dealing with my child. I’m sure you have as well.
When he was younger it was those horrid stares and backwards comments that people love to make. They loud sighs from the table behind me that made me retreat back to my home and isolate myself and my child. As he has grown it has changed to comments about being able to tell if he has autism or not, all the way to comments about the age appropriateness of him carrying around a stuffed animal at the age of 14. It’s like the general public has this idea of what autism is and they stick to the stigma no matter what we do to change it. Many times, it seems to me that the only thought of autism to the public is of the most severe children, the ones that are nonverbal. Or they resort back to the movie “Rainman.”
This reaction is why teaching acceptance is key. We should teach this at an early age and continue to teach it throughout life. These stigmas are why spreading the awareness is such an important thing. With Autism Awareness month fast approaching, this is something we should all have on our minds. Most all of us have had experiences where we are left at a loss for words over the reaction of someone in the public to our children. How we handle our reaction from the moment they take us aback is key. Use these moments as teaching tools, not moments of despair. Let me give you a few examples from my life.
One of the most insulting experiences I ever had was in a thrift store in Washington State. The attendee there engaged my son in conversation. Something he has a limited ability in doing. His conversations are typically one-sided. Meaning, they must be about something he is interested in, like Pokémon. I could tell the attendant was getting a little aggravated with the fact that this teenager wasn’t answering her questions and kept directing her attention back to the Pokémon figure he had brought in with him. From here she got plain rude.
She asked my son, “Why would a boy of your age want to play with a stuffed animal, they are for babies. People will think bad things about you.” Before I could interject my son retorted with, “Pokémon are [the] best people in the world, they aren’t mean to you.” I, of course, proceeded to explain to her that he has autism and that he communicates but his skills are limited. I also explained that he has issues with reality when it comes to his stuffed animals. This woman went on to tell me that she knew what Autism was and that he doesn’t have Autism. Autistic kids drool on themselves and can’t talk at all. Apparently, she also thought that they do nothing but beat themselves.
I was flabbergasted. I took this opportunity to correct her ignorance in the topic. I told her about the different severities and how each child has different abilities. I also made it a point to tell her how hard my son had worked to get to where he was. I left the store with a sense of accomplishment instead of dread that day. I also sensed that the clerk felt very informed and wouldn’t make that mistake again.
Another instance that I had was with a nurse in a well acclaimed hospital. I loved this hospital and hadn't had a bad experience until that day. You see, until then I had never had a neurological nurse pass judgement on my son's diagnosis. While it was in no way done to intentionally hurt me, this woman's words stung deep. I had never had a medical professional with NO experience in dealing with Autism [aside from hooking an Autistic child up for their EEG from time to time] look at me and tell me her opinion on my child's diagnosis based on less than one hour with him.
What did she say that was so awful? She looked at me and uttered the following:
"Well, he lets me touch him and he set still so he couldn't be Autistic. I've seen bad kids come in here that won't let me touch them."
First of all, it gets worse from there. Her later retort to my reply was enough to instigate a riot. For those of you that cannot see the horrid display of asininity in her comment--let me assure you that is one of the most insulting things you could say to a parent with a child that has Autism. While it may seem like a compliment, to most of us it is not. In reality, it happens to be an unenlightened person passing judgement on a situation they know nothing about. Whether our children “look” Autistic to you has no relevance to the efforts they put in to get to the point they are at.
That nurse had no clue what I go through with my son daily. She had no clue what he goes through because of people like her, daily. That one statement takes away from all the work he has put in over the years. He has worked 10 times harder than any "normal child" just to be able to sit still and that "simple" task- well, it took him 10 years to somewhat master being prepped for procedures. I made sure she knew it.
I asked her if she knew that I had spent two weeks doing EEG practice and watching videos with him so he'd allow her to touch him? NO, she didn’t! Did she know that he'd had a number of electroencephalograms in his life? SHE SHOULD'VE! Did she know he is on anti-psychotic medication and without it he cannot even speak, let alone sit still? NO! Did she care to ask? NO! Did he twitch the whole time she was touching him? YES! He has sensory issues [SPD] he hated every minute of it; however, he did so beautifully you'd think she'd have focused on that not on his diagnosis.
Secondly [in my opinion this point needs to be put up on billboards nationwide and taught in every medical school]:
Unless you are an expert in Autism, and most of the time even if you are, do not pass judgement on the severity of a child that is diagnosed with Autism based on spending less than one hour of non-diagnostic time with them. If you are in a position where you must discuss the child's disorder--use your words wisely. Every one of our children are different. Each have their own set of deficits and each has their own set of gifts.
You cannot possibly base your opinion on how one Autistic child "is" based on another Autistic child you saw 10 minutes prior or based on all the children with Autism you have worked with over 33 years hooking up EEG wires- as this nurse so proudly told me of herself. Autism has no specific "look" or a specific set of "symptoms" every child will present with. That nurse's statements have taken away from my faith in a wonderful hospital. That one nurse's actions took away from a family’s hope for quality care this time.
Her retort to my educational session with her:
"Wow! I could barely tell he is Autistic. Autistic children don't act like him"
Mind you she had an 11-year-old laying in front of her with the cognitive level of a 6-year-old and a severe speech delay. He had a particularly hard time making eye contact and he stimmed constantly, yet you could “barely tell.” And, that description is the short and sweet one. He has worked way too hard to allow anything to take away from the path he has walked.
Our children have some rather tough stigmas to overcome already. There isn't enough known about what is going on in their heads and not enough education in society on what this disorder is. I stand here as a seasoned mother of an Autistic teen and I scream to the public to stop and think before they speak. The last thing on earth we need is the professionals that work with our children or people checking us out in line helping to add to the stigmas.
Let's not kid ourselves here though. This problem is everywhere. In the schools, therapist offices, hospitals, and behind our own doors. I just cannot except the ignorance from society towards a disorder that now has a prevalence number of 1 in 68 children (1 in 42 boys and 1 in 189 girls.) It’s time for more of us to come together in force and help end the stigma surrounding our children and our lives.
How many parents out there have dealt with the same ignorance?