Progress Schmogress…….The Autism Progression Myth 

It’s been a REALLY long time since I’ve done one of these. I’ve been busy writing my book (and having some fun in between) and I finally got some ‘blog inspiration’ today.

Sometimes reading other people’s blogs about autism will strike a chord in me and make me want to expand or dispute that particular topic. Todays topic was something like, “What is the hardest part about autism?” This particular writer said that her big thing was ‘other peoples’ perceptions and misconceptions about autism in general, and how autistics have not been accepted into society as a whole. I 100% agree, and this issue is a biggie for me too. However, it made me think about what bothers me the MOST about having a child on the spectrum, and that answer was easy. Unfortunately I can’t sum it all up in one sentence, but I will try to narrow it down:

Most people, even the autismly uneducated (I just made that up, but I like it), know that all children on the spectrum are different, and have different abilities and disabilities. But with that also comes the assumption that all autistics will improve with early intervention and therapy. THIS IS MY HARDEST PART!!! Because they don’t!

I can only speak for my own experience with my son, but to explain a little about my precious Keegan, he has always been on the spectrum in my opinion, even since birth. However, a lot of his milestones were just slightly delayed. Even though he wasn’t saying “mom” or “dad” before he was two years old, he was counting to 20, naming every single color he could see, along with every shape, including the dodecahedron (yes, that is a thing–It is 12 sides). Sure, most of it he learned from Muno and Brobee on Yo Gabba Gabba, or Geo and Bot on Team Umizoomi, but he was learning, retaining, and demonstrating. We started occupational therapy, speech therapy, physical therapy, ABA therapy and every other therapy before he was two and a half. We were also seeing a developmental pediatrician, chiropractor, and a psychiatrist. Plus, we started strict diets and nutritional supplements. We read it all and did it all (and I’m not even listing everything). Luckily we could afford it, so my husband worked for it, and I drove Keegan all over for it.

Jump ahead 4 years………..Keegan is almost six and a half. He cannot count to 5. He is still not potty trained. He still can’t say “mom” or “dad”. He lost most of his speech. He lost his concentration and focus for almost everything. He has zero interest in absolutely everything (besides dribbling a ball–he can do that like nobody’s business). He says ‘orange’ when he really means ‘blue’, and calls the letter “D” an “F.”

Somewhere around 30% of autistics will regress around age 2-3 (and no, it is not because of the fucking MMR shot!! JS!). I’m not sure on the percentage of those who gain those skills back, but my child never did. Did we give up on him? Hell no! Are we going to give up on him? Absolutely not! He is still attending ABA therapy daily at the Marcus Autism Center, and has for over a year. He is still getting speech and occupational therapy, and many more treatments and therapies that we have added and/or never stopped.

Another annoying assumption that I get asked all the time is “when will he get better?” There is no answer to this. He might get better, but he might not. I didn’t think he would regress as much as he did. I also thought he would at least gain some of his skills back by now, but he hasn’t. Therefore, I have no idea if/when he will ever get ‘better’.  If I knew when, I would put that expected “better” date on the calendar and have the biggest fucking party when the countdown ends. I would do so much more and stress so much less. But I don’t know and I may never find out.

I guess this regression issue hit hard yesterday when I received Keegan’s new scores for the VB MAPP (verbal/behavioral milestone assessment). He had little to no progress in most areas since his last assessment in 2014. That feels like a super strong punch in my gut. Also, his IEP is coming up next week, and they are talking about a new placement/new school for him, and that has me hurting inside, too. And to top it all off, I went to see the new movie, The Accountant, last night. It’s about a high functioning autistic, but I won’t give away the story. Anyway, these kind of movies always get me thinking about how others will view autism based on a certain character. I know many parents of autistic children hate the movie ‘Rain Man’ because of the stereotype it portrays. Well guess what…Rain Man does exist whether you like it or not……..he is my son.

Just like all autistics can range from the low functioning ‘rain man’ to the high functioning assassin/’accountant’, all autistics can improve/regress on all different kinds of levels. Sure, therapy should help, and most of the time it does. But sometimes it just doesn’t. I read a study once about two very similar autistic children who received the exact same treatments and therapies at the exact same time and the same frequency from the same person. One child progressed significantly while the other did not progress at all.

So, please don’t stop asking questions, even if I may not like the question. More importantly, you can ask even when I don’t like the answer I have to give you. Just remember my favorite saying….”If you’ve met one child with autism, you’ve met one child with autism”.

5 Minutes of Autism

As I pull into the parking lot to the Marcus Autism Center today for probably the 100th time, an odd memory comes to mind. I don’t know why it comes on this particular day–there was nothing I saw that triggered anything, or no weird vibe from the outside. But something made me remember the first day I drove by this particular Autism Institute.

It was about 10 years ago, and I was on my way to my hairdressers new place. It was not my hood and I was not really familiar with the area, and when I saw the large center, I thought, ‘wow, I didn’t realize there was an actual center just for autism’. My next thought was something like, ‘I hope I never have to step foot into that place.’

I have always been horrified of having an autistic child. I had worked with them directly and seen the pain on their parents faces, and never wanted to be “that mom.” I never wanted to have to read my childs mind, or have to ‘put up’ with a disastrous temper tantrum in the middle of the grocery store–getting bad looks and eye rolls. These fears are not necessarily an insult to the autistic child and/or family as much as it is an insult to myself.  I knew that my limited coping skills and selfishness would get in the way of being a decent parent and human.

Fast forward 10 years and here I am bringing my (mostly) non-verbal 5 year old for his daily Language and Learning Center appointment. My biggest fear of ‘living with autism’ has come true and I’m still alive. Barely, but still alive. Probably a shitty mom on some days, but still the best mom I can be. And, probably an overall crappy human when I don’t get any sleep due to my autistic child (like the typical 5 hours we got last night), but trying my best to be decent.

As we walk into the building, I see a mom walking out the door pushing a stroller with her son, who has an oxygen nasal cannula. I recognize the sadness in her eyes. My child has luckily been blessed with overall good medical health, so not that kind of sadness. But the ‘I hate seeing my child suffer’ kind of pain in her eyes.

My son, Keegan, is his almost-usual sweet self as we enter. He quietly goes to his “spot” to wait for his therapist. As I am standing in line to check-in, another boy in his class begins to cry loudly, while his grandma holds him tight and rocks back and forth, trying to calm him. I have known this particular child for a few months and know this is not like him. He is usually just like Keegan, happily running around ignoring anyone and everything around him.

But today was a little different. Keegan was pretty much the same as usual, but the vibe inside was definitely off. It must have been the ‘stuck inside from the rain and no therapy because of Christmas vacation’ kind of vibe. While this sweet boy cried uncontrollably, another girl grabbed Keegan’s stim toy out of his hands and shoved it in her mouth. Luckily, Keegan didn’t seem to mind, but the child’s dad apologized and gave the toy back to me. It then hit me how graciously nonjudgmental this place is. As much as I was dreading it from the outside many years ago, it is the safest and most sympathetic autism-friendly location I have ever been to. I never have to worry about the “looks and eye rolls” that I was dreading many years ago. I know when my child runs over and licks the wall, or stands in the window pane, I will not get any nasty looks. I will only get the same compassionate look that I was giving the mom with the boy on oxygen, and to the grandma holding and squeezing her grandson, and to the dad whose daughter took my son’s toy. The ‘look’ that, in my experience, only special needs parents possess.

Next to the waiting area is the “severe behavior” unit. This is exactly what you would think it is. Everyday, I see a group of 6 employees escort a young lady through the lobby, circling about 3 or 4 times. I’m assuming its part of her protocol, maybe forcing her to get used to loud groups of people and other kids. Except, I’m not going to lie….it is a little disturbing. Everyday, all 6 employees are covered from head to toe in protective gear, and 2 of them are actually holding her by the arms leading her through the building. I don’t mean its ‘disturbing’ because I have never seen anything like it. I have worked in an inpatient psychiatric facility for 13 years, I have seen it all. But, disturbing because I can only imagine what it’s like at home for her family, assuming she has family and a home to go to. I mean, if it takes 6 adults, all in protective gear, to walk her 10 feet, what is it like for her parents?

I have never seen this young lady actually act out, until today. In my opinion it wasn’t that bad because, again, I have seen a lot working with majorly psychotic patients.  But it was enough for them to force her onto the ground, which I’m assuming was for her own safety. At this time, the dad who handed the toy back to me earlier kindly shielded Keegan from the chaos. Keegan wasn’t necessarily in the way, it was just that instinctual parent reaction, especially the autism parent reaction, to protect our kids who can’t protect themselves. And I appreciated it.

While all of this was going on, another boy, about 9 years old, was having a meltdown because his mom wouldn’t give him the pizza she was holding, which was actually part of his reward system for therapy. Therefore, he couldn’t have it yet. She appeared understandably frustrated, and raised her voice to tell him to stop. This, of course, made him scream louder and harder, and that made mom more frustrated. The cycle continued until his therapist finally came and got him and the pizza from the lobby for therapy. Even though I know mom felt comfortable in that environment, I still gave her the ‘compassionate look’, because I know some days are worse than others.

When Keegan’s therapist came out, and the chaos of the last 5 minutes were over, the only thing I could do was take a deep breath. I sat in the lobby for a minute, watching the girl on the ground, and began reeling with various emotions. I felt gratitude that I have somewhere I can go with Keegan that I know I will never get dirty looks, eye rolls, and negative comments. I felt sadness for all of the parents that have to deal with this on a daily basis like I do, and even more sadness for those who have it WAY worse than I do. I smiled at the thought of the special camaraderie that exists between autism parents, where you never need an explanation. And even though the last 5 minutes were full of screaming, negativity, and chaos, I was content in my thoughts of the downright benevolence toward each other in this small community that is autism, even if it is just an understanding look.

We got this!!!