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”.

Autism Awareness vs Acceptance: Does there have to be a difference?

Well, it’s that time of the year again……………Autism Awareness month. Where puzzle pieces and ‘light it up blue’ are in full effect. Normally I am posting crap all over Facebook, shoving this so-called “awareness” into people’s faces. However, I have been seeing a little too much negativity towards awareness and a push towards acceptance “instead.” Aren’t they, in a way, the same?

Everyone who knows autism, and even the ones who have no clue, have probably heard of an organization called Autism Speaks. If you haven’t, (because you obviously live under a rock), the group calls themselves “an autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism.” And to my understanding, they are the ones who started the “blue” campaign to push awareness, and created the puzzle pieces to signify autism.  Sounds like a good organization, right?

Well, not according to some.

Because I am THAT mom who reads anything and everything there is to know about autism, I have lately been focusing on what the actual community thinks and feels about autism. Not the parents, but the autistics themselves.

I first came across some information on whether the community, as a whole, wants to be called “autistics” or “those with autism”. There’s actually quite a debate about this, but overall, I see a push in the “autistics” category. Most would rather be labeled autistic than have the “condition” of autism. They believe that with the word ‘autistic’, people will see them for who they are, and will see that autism is not just a “part” of them………….a part that should be fixed……a ‘disease’ they have that needs to be cured.

First of all, I’m going to listen to an autistic about autism before I’m going to listen to anyone else. So this got me reading more. I soon realized that some on the spectrum are not big fans of Autism Speaks. And given the explanation above, I can see why they don’t really care for the organization. If Autism Speaks focuses on a ‘cure’, they are not focusing on the person. ‘Treating’ insinuates something is wrong and must be changed. Most autistics don’t want to be changed.

A particular blog post that I came across when doing my research discussed the fact that the organization only gives a very small amount to the actual autism community/families, something like 4%. It also emphasized the fact that there are no actual autistics that are employed in the Autism Speaks organization, only parents of. The post criticized the organization for pushing awareness instead of acceptance.

So, now for my two cents…………I think awareness and acceptance go hand in hand. There doesn’t have to be a great divide between them. Personally, I don’t like a lot of the things that Autism Speaks stands for either, but there are also a lot of good things. And, I bet if it wasn’t for AS, there would be a lot less information out there on autism in general. Also, because the group is quite large, even that 4% will go to a lot of families.

Do I want someone to find a “cure” for autism? Absolutely!!! Call me a horrible person, I really don’t care. In my opinion, I would be a bad mom if I enjoyed watching Keegan suffer, and I’m here to tell you that I don’t! I would be a bad mom if I didn’t care that my child may go his whole life without ever saying a complete sentence, but I do care. I would be a bad mom if I didn’t care one way or the other that Keegan learn daily living skills so that he can actually take care of himself when I die, but I do care and need him to. And these are all things that impact Keegan’s life in a negative way due to autism and autism only.

Do I want to change his precious and innocent soul? Hell no. Do I want to change his silly quirkiness? Never! Do I want to wipe that ridiculously amazing smile off of his face? Absolutely not. But all of this, along with everything else that makes Keegan perfect, is not the autism part.

I don’t know what my son thinks about having autism, because he can’t tell me. I do know he cries when he can’t think of the right word. I do know he has to stim almost non-stop all day in order to help his body feel normal. And, I also know that he struggles a lot with fine motor skills that most kids his age could easily do 3 years ago. And I would like to think that Keegan would want that “cure”, too.

I want Keegan to embrace his autism someday, but because of the barriers that autism creates, he may not ever develop a capacity to do so. Awareness isn’t a negative thing. It’s good to be ‘aware’ of everything about autism. Acceptance is important, yes, but we don’t stop helping our children just because we have accepted the autism.

So go ahead and wear that blue tomorrow for Autism Awareness Day,  and sport that puzzle piece paraphernalia…….I know I am. This doesn’t mean that I accept Autism Speaks, it means that I want the world to know that I love my child and every little thing about him. It says that I’m proud that he works so hard despite his struggles, and I’m not afraid to show it. And most importantly , I wear my blue and sport those puzzles because it says, “ask me anything you want about autism and I can tell you what you need to know about both autism awareness AND acceptance.”