Autistic children grow up into autistic adults. The implications, on both society and the adults these children are becoming, are enormous. Lisa Joyce Goes gives us a taste of what’s coming.
If you read Lisa Joyce Goes’ first piece, Two Minutes in the Life of an Autism Mom Vs Normalization of Autismization, then you know what a day in the life of the mother of an autistic child can be. Now, Lisa has produced something powerful and explosive.
Autistic children grow into autistic adults. There are thousands—millions?—of them, and there are some hard truths that must be faced about them, their nature, and how we’re going to deal with it. This is an epidemic the likes of which has never before been seen, and the implications are very nearly incomprehensible. Read of Lisa’s experience with an adult autistic man, and wonder what the lives of autistic children will become when they’re grown:
Three years ago I was thrown into the world of autism parenting thoroughly unprepared for the politics that came with it. At the time I didn’t know that my son’s school would fight me when I asked them to give him an enzyme with his lunch, despite the MD’s note that accompanied my request (it wasn’t listed in the FDA’s 2007 book of approved drugs). I didn’t know that dietary limitations are really “suggestions” unless I provided those feeding him with copious amounts of medical proof of his sensitivities. My word as his mom was simply not enough. At the time, I didn’t know that we could have our younger son taken away from us for choosing not to vaccinate him. The medical reality of autism and his older brother’s descent into neurological illness, bowel disease, iatrogenic central nervous system and mitochondrial damage after every “well-baby” (pharma-happy) visit–is entirely lost on government officials.
After several months of research and doctor visits we were literally drowning in contradictions. Autism, yes, no cure, metals are frightfully high, nothing to do with vaccinations, speech came after starting a gluten-free/casein-free diet, off the charts titres, clostridia, yeast, not immune to polio despite full vaccination, rubella causing sight problems. Thoroughly overwhelmed I decided to make a documentary to help myself track (what I hoped would be) the process of recovery. In hindsight this was a rather foolish endeavor as I was terribly naive about the film business. Still it’s hard to regret the experience because I interviewed many parents, kids and adults with autism, doctors, industry experts and prominent members of autism non-profits. I might not have a film to show for it, but I got one hell of an education.
I recently caught up with a young man, we’ll call him Carlton, who was one of the first adults with Autism I’ve had the privilege of interviewing. His dad is a hard-working man of humble means, who has always tried to do right by him and his neurotypical older sister. When we first met he could not believe I thought I could cure Noah of Autism. It wasn’t that he found it foolish, he considered it confounding. As he puts it, “In the early 90’s there was nothing. Nothing. We just walked away with a diagnosis and nothing else. We had no idea what to do for him. We just brought him home. “A lot of them grow up to be real bright,” they said. We just always had real problems though. It was always hard.” He and Carlton’s mom divorced soon after the diagnosis. Carlton is now in his mid-twenties and his father is re-married. His second wife was under the impression that as he aged he would be less present in their lives. “This was not part of the deal” she told me. Carlton’s sister, who has always been a big part of his life, recently married and started her own family. Carlton spends most of his time in a residential facility where he is medicated. Below is a snippet of our latest discourse. He met my son with Autism, Noah, only twice before this encounter.
Carlton: Hi Lisa. People call you LJ. How is Noah?
Me: Wow Carlton! You have a great memory. He is doing well. Thanks for asking.
Carlton: Will he be here today?
Me: No, he’s working with his therapist today.
Carlton: You got him a therapist? Hmmm. Okay. What does the therapist do with him?
Me: Well, today she is helping him hold a pencil the right way, helping him write his name. Then she will take him to the park and teach him to follow her instructions and play on the playground equipment. She’s helping him learn to go to the bathroom, too.
Carlton: That’s nice. So you love Noah.
Me: Oh my gosh, yes Carlton. I love him with my whole heart and soul.
Carlton: Yeah, you love him a lot. Hmmm. That’s nice. Even though he has Autism? Do you think he has emotional problems? Like me.
Me: He loves me even though I don’t have Autism, so why wouldn’t I love him because he does? It would be pretty awful if we had to not love people for being different. If that were true I wouldn’t have anyone to love. Just thinking about it makes me sad. I don’t think Noah has emotional problems. Why do you think you have emotional problems?
Carlton: Is he violent like me?
Me: What do you mean?
Carlton: Sometimes I can be bad. I hope I don’t have to go to prison. If I do have to go to prison would you visit me? Because I would call you up and ask you to come because I don’t think anyone would visit me. But I would still call all my friends and tell them where I was and say that I would like for them to come visit.
Me: You are not bad Carlton. I think sometimes it’s just hard for you to make the right decisions. It’s hard for all of us to make right decisions, sometimes. I would visit you in prison but I hope you never have to go there. It’s not a nice place.
Carlton: Yeah, but you know that one time, with the cops…by the cops…I almost got tasered by the cops. Would you love him still if he got tasered by the cops and had to go to prison? That’s really bad.
Me: I love Noah, no matter what–even if he had to go to prison. I am trying to get him better so we don’t have to worry about that happening. Noah is not a bad boy and you are not a bad man.
Carlton: Yeah. You think you can get him better from autism?
Me: I hope so. Noah is really sick. He’s got lots of viruses in his body and he doesn’t feel very good a lot of the time. If you could get better and not have Autism would you want that?
Carlton: I do not want to have Autism. No. I don’t.
Me: Can you tell me what it feels like to have Autism, Carlton?
Carlton: I don’t know. It’s hard. (He looks down, starts to fidget. I overhear his dad tell the friend I have with me that his meds don’t seem to be working today. Carlton takes a step towards me, grabs my wrist and yanks off a few of my bracelets. He starts shaking them and staring at the bigger silver balls connecting the longer strands of beads) Does Noah hit you sometimes?
Me: Yes, he does. I hope when Noah can control his body better he won’t hit so much. I know he knows that hitting is wrong.
Carlton: Hitting is wrong. Does it hurt?
Me: Yeah. Sometimes it hurts.
Carlton: Oh. Do you get mad?
Me: Yes, I do. I try not to get too upset though. It just makes it worse.
Carlton: Yeah, do you think Noah would like me? Since I have Autism too.
Me: I think he would think you are great. You would like him too. He can talk now. He couldn’t talk the last time you saw him.
Carlton: You don’t think he would want to hold me down when I get upset?
Me: I don’t think so. You are so much bigger than him though–he couldn’t hold you down.
Carlton: No, he probably couldn’t. Okay tell him I said “hi.” It would be funny if we went to prison together. Wouldn’t that be funny?
Carlton is a big man. Not fat, but tall and broad. He probably would have made an outstanding football player. He has had multiple run-ins with the law. He has hurt his family members during his meltdowns. I suppose many people in Carlton’s life regard him as a mental health bomb. A “bad” bomb that is programmed to go off at anytime, because of his “emotional problems”. Even Carlton is scared of Carlton. I would be lying if I said I was not startled when he grabbed my wrist. I had my daughter nearby when he stepped toward me and I felt an instant compulsion to shield her. It feels terribly hypocritical being frightened of someone I believe I am ultimately trying to protect.
I thought of this discussion with Carlton when someone who’d read an old article of mine suggested I “…just love Noah and everything will be okay.” I wonder how Carlton’s father, after years of watching Carlton get bullied and abused would have responded to that statement. After years of bolting upright every time the phone rang in the middle of the night fearing the unthinkable, “I’m sorry sir but Carlton seems to have wandered away.”
The truth that no one with a small child with autism wants to hear, is that someday, our precious children could very well be in Carlton’s shoes. My precious little boy could grow into Carlton’s llife. Carlton is someone’s precious boy. Carlton is someone’s loved, precious boy. Despite the two decades separating Noah and Carlton, many similarities exist. They both possess a charming innocence, an observant demeanor, and beguiling smiles. Except, Carlton’s visage reveals a mouth full of teeth someone stopped caring for long ago. Brown spots, pits and cavities mar his otherwise perfectly straight teeth, set in a beautifully aligned jaw. I can’t help but think somewhere along the lines someone stopped caring. What does it matter, anyway? Why does he need to have beautiful teeth? What is he going to do with them?
I’m sorry, but no. No. Just loving Noah will not make everything okay. It is not okay to put a great big feel good, happy-face heart stamp on the horrific tragedy that is Autism. Like the horrendously wasteful campaign for “awareness”, the “love is enough” notion is a master disguise for the “avoid conflict, avoid the truth, and keep the peace at all costs” agenda. Love, awareness, and peace are simply words that feel good but are meaningless without real world application. Real peace, like recovery, has a price, and it is not paid by everyone sitting around talking about what a blessing the Autism epidemic is. It takes time, energy, resources, work, education, tireless investigation, review, and correction!
I sit in the waiting rooms of my son’s therapy centers, doctors’ offices and educational facilities along side countless parents of beautiful little zombies with dark circles under their eyes and gaping eczema wounds on their arms and legs who bump into walls, furniture, and each other with no regard for their own safety or surroundings. Their moms, as they affectionately dole out sips of coke and bites of Doritos, have no idea what is happening in their own country, their own doctor’s offices, their own pantries…to their own children. They love their kids, as I love Noah, as you love your children. This is not nor has it ever been called into question.
Love will only make everything okay if we are afforded the opportunity to teach it as a guiding principle to OUR GOVERNMENT, whose policies favor pharmaceutical companies over damaged children. Love will make everything okay if those who refuse to accept, acknowledge, and investigate the autism epidemic will stop harming, judging, blackballing, suing, threatening, and destroying those who do. And vice versa, our community is not without fault. Our children’s victimization does not exempt us from standing up for others or conducting our own investigations–quite the opposite—it compels us. Ultimately, and I guess the commentator was right on this: Love will indeed make everything okay if it provokes us to action, to set aside our differences and join together to fight for our children’s lives, their health and their future. For Carlton, Noah, and all our children we must, at the very least, try.