What do you think of when you hear the word autism? The movie Rain Man with Dustin Hoffman playing a savant who counts train cars or toothpicks in an instant and screams when he can’t watch his favorite show at the correct time? Or maybe a higher functioning child who is in regular classes at school but just needs some help learning to “fit in” ? Or the smiling, non speaking child who just seems to be in her own little world?
Autism is an umbrella diagnosis. It runs the gamut from high functioning (termed aspergers) to the point where except for a “quirk” or two, you’d never know the person was on the spectrum, all the way down to “low functioning” where the child or adult does not speak, is not toilet trained, and is hard to engage. And there are many, many stops along the way between the two ends of autism. The old saying goes, if you’ve met one person with autism, you’ve met one person with autism. If you gathered 100 people into a room that held that diagnosis, there would be similarities, but likely each would be on a different point of the diagnosis.
The cause(s) of autism are up for debate. There are many conjectures, but very few real answers. Is there a cure? No. There are, however, hardworking parents, families, caregivers, and professionals who do their best to help the individuals figure out this world and their place in it.
During April, which is Autism Awareness Month, you’re likely to see the blue lights, the puzzle pieces, the Yay Autism shirts, slogans, and so forth. Those are all good and I support, encourage, and participate in a lot of it. But what you’re not likely to see is the ugly, down and dirty, real aspects of autism that may be off putting. Or you may have seen it in public and held your own thoughts about it. A few of you may have been so bold as to give the parent of caregiver your opinion on the matter.
The truth is, no, not all people with autism are savants. While there are some, many won’t play the piano brilliantly by ear or figure out math problems in a heartbeat or run a multi billion dollar corporation.
Another truth? Autism does not go away at the age of eighteen. But some insurances must think this is the case because in at least one state, if not more, psychiatrists hear the words Autism, over 18, and Medicaid, and the answer is Nope, sorry. Can’t help you. Are there some that will? Yes, and they have a waiting list so in the meantime you figure it out.
Yet another truth: If you have nothing good to say, don’t say anything. Don’t stand and stare, either. Go on about your business. If you see a child or an adult “totally losing it” in a public place, think what you will but keep it to yourself. It could very well be a person on the spectrum who just cannot handle things right now. Mom and or Dad, or a caregiver, is there, either helping them to calm down or getting them out of there so that they can calm down and continue with the day. Not always do we know what sets off a person on the spectrum. The buzzing of the fluorescent lights, someone’s overuse of fragrance, the conversations, the music, the bright light itself, are just a few things, and can be overwhelming enough for a neurotypical person, but most times we can tune out a lot of those distractions. Those on the spectrum may have a harder time with that.
Well, shouldn’t those kids (or adults) be kept home or better yet, in an institution? Last I checked, the calendar told me this was 2018. And yes, I’ve heard a few people tell me to my face that my child needed to be institutionalized. No, he doesn’t. At least , not yet. I know there are parents who have had to make that decision because it was just too much to care for their child at home anymore. And my husband and I may eventually have to make that decision, if there is something available. Many times there isn’t. But until then, please keep that opinion to yourself. Parents dealing with a meltdown don’t need the added stress. But quite honestly, the one you saw having a meltdown is probably just having a bad day. We all have them, we just handle them differently. Part of a caregiver’s job, as well as some professionals, is to teach them how to deal with day to day life. The child can’t learn that sitting at home every day.
The ultimate truth is, parents of a child (or adult child) have to deal with meltdowns where the child tries to self harm or tries to hurt others. Not every parent has to deal with it , but some do. Some of us also have to negotiate seizures, pica, OCD behaviors and the list goes on. There are times when I personally think I’d be safer as a lion tamer. But this same child who is trying to deal with life and communicate the best he can that something is wrong, is most often a sweet, easygoing young man who smiles, gives high fives, sings to himself, loves music, and occasionally gives hugs.
I don’t always handle the meltdowns properly. I get frustrated beyond belief because I feel like I’m in this fight alone, when I know that I’m not. I do have my husband, but it’s usually tag team or “hang on and do the best you can because I can’t leave work” type of thing. I’ve wanted to give up many times because a stay at home mom doesn’t always get a break. I’m so grateful for two very kind, loving sisters in Christ who have gotten me out of the house a time or two so I can catch my breath and refresh for a little bit. It is much needed, much appreciated.
The words spoken today are not meant to garner pity. Anything I say here is simply because I need to talk and maybe someone will listen. My husband and I constantly rattle the cages of the doctors and will continue to do so until something gives. I hate autism. I despise it and the bffs it tends to bring along with it– OCD, seizures, digestive issues, etc. I love my son. My “yays’ belong to Baby Bear, who isn’t a baby at the age of 25, but the name still fits. My yays come when I hear him call me Mom (that’s rare!), or when he gives me a hug out of the blue and it’s not a ploy for cookies, when he does something simple like go to the bathroom on his own. I love him, not the diagnosis.