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”.

What Every Autism Mom Wants for Christmas

It’s 6:30 AM Christmas morning and I have been awake for over three hours. No, I’m not waiting for Santa, or busy wrapping gifts. I am lying in bed wishing I was busy wrapping gifts, or that I had a reason to be excited for Christmas.

Holidays are not usually the best of times in an autism home. The break in routine, the lack of therapy, and the family visits can be a bit challenging. And in our case, add the sharing of pink eye throughout the house to make the holiday just a bit more cozy.

My 4-year-old autistic son, who struggles with sleep issues, is snoring away, of course. I’m sitting here thinking about how I was when I was his age on Christmas morning. I couldn’t sleep because I wanted to hear Santa on the roof, and I wanted to catch him in the act coming down our chimney. I remember leaving cookies and milk so he could be refreshed. I couldn’t wait to go into our living room and see the couch full of wrapped gifts–everything I wanted.
I also remember Christmas morning 4 years ago. I was holding my baby in my arms and I couldn’t wait till he was a little older and he could have those excited feelings too, and we could lavish him with everything he wanted.

Well, that day is here, and it is nothing like that. My son didn’t ask for anything for Christmas because he can’t talk. What’s worse, he has no idea it is even Christmas. He could absolutely care less that he has 10 wrapped gifts waiting to be opened. And to top it off, he won’t even open them. He would be much happier playing with the paper they are wrapped in–throwing it around in the air, or putting it in his mouth and chewing on it. The only thing that will make him happy this Christmas day is the popsicle stash in the freezer.

Facebook and Twitter has not helped the “Holly Jolly Christmas” spirit this week. It’s just a big fat reminder of how different my world is from everyone else’s. All of the birthday and christmas parties we were never invited to……..all of the school concerts that my child will never sing in…….the christmas trees that we will never have up because my son will tear it down or eat the ornaments…….the family portraits that we will never have because my child can’t sit long or look at the camera…….the christmas feasts my child will never eat………the messages from friends asking me what Keegan wants for Christmas when I just wish they would understand that as sweet as they are, Keegan is not able to wish for anything……..I really could go on and on, but then someone might 1013 me for a psychiatric evaluation.

When I took Keegan to the doctor the other day for his pink eye, the doctor was asking me questions as though I was just starting on this journey. “Is he getting floor-time therapy? Have you read the article about the autistic boy and Siri? Is he getting assistance in school?” And, of course, the answer was “yes” to everything. Then he said, “You just have to find that key to open him up.” I told him, “we have been looking for that key, and trying every spare key we could find for over 2 years. I know he is so delayed and so hidden in his autistic world, but it is not for lack of trying, Dr.”

I realize there’s only one thing I want this Christmas, and that’s why I have been tossing and turning since 3:00 AM. I wish Santa would slide down my chimney and bring me that key.

Link This, Autsim!!!!!!!!!

I just opened my Facebook news feed after a couple of days of FB vacation, and the first post I see is about a new “link” to autism. Because I have a child on the spectrum, I am part of many autism support groups, both in person locally, and amongst social media. It seems like everyday I see something new about a study that found some sort of correlation with autism. I’m here to say, I am so sick of it!!!

At first, I would read every single one of these and act accordingly. If they told me that autism is merely the result of a gut issue, I would buy the best probiotic I could find. If I read that it was a gluten issue, GF all the way! If it was a dairy issue, cut the cheese (pun intended). Then, you realize you are only left with a handful of food options. Then the “research” tells you that you can’t have any corn ingredient either, so then you are down to only 3 options to give your child. While you are starving your child, and following what all the books and research say, you realize your child is not improving, but is regressing instead. Then you try something else, because that’s what is in the updated autism news ‘links.’

You read that B vitamins tend to be very low in autistic children, and his third blood test confirms this. You order $200.00 worth of B12 shots through a special ASD (Autism Spectrum Disorder) pharmacy, and give your sweet little baby a shot in the ass every 3 days. You do this for an entire 5 straight months, because that’s what everyone says to do, and you still see no improvement and even more regression.

Now you are starting to get a little skeptical. You want to try everything because there is so much out there that talks about “curing” autism, but nothing is working, and is actually making the situation worse. The Dr’s tell you to try it for 1 more month to get the full effect. You are torn between torturing your child and “curing” this horrific “disease”.

Then you read that ‘paternal age’ is the big correlation to autism. Do you hate your husband for being old? Or hate that he is hating himself for being old? You then read that the pitocin that the Dr gave you when you were in labor could possibly have caused the autism. Do you hate the Dr for not giving you the option of taking it? Do you hate yourself for allowing that to happen, and not reading enough about pitocin before your delivery?

The list of “reasons” and “links” and “cures” go on and on. So, what do you do? Do you turn off all social media and the TV, and live in your little bubble of ignorance? Only to later beat yourself up for not reading enough or asking enough questions to help your child.

Then, when you decide to check out new “links”, you start asking yourself questions like, “If autism was a gut issue, what does that have to do with my husband being old at the time of conception?” Or, “If it is because of gluten, then how is it that all of the high functioning autistic children I meet eat gluten-filled diets all day long?” So, when do you stop the madness? When do you say, ‘I don’t give a shit how or why my son is autistic.”? Or do you continue to jump on one leg 3 times while holding your breath and patting your tummy with your left hand with one eye closed because that’s what the books say to do to cure the autism?

I don’t think it ever stops. At some point you have to weigh your options. You have to assess if you have given it enough time, if you are seeing improvement, and if it is within reasonable limits. You also have to let go of any guilt that you may have about your own role in his autism. You have to ask yourself why it is so important to ‘cure’ him, and what that means to you.

Someone told me today that they drank out of the water hose all the time when they were little, and they were fine. So did I. So, of course, I immediately thought ‘maybe that’s why my son is autistic.’ Sorta jokingly, but not really. This is the kind of thing I’m talking about. This is what we parents of autistic children do all the time. Overanalyze, over-assess everything because there is no reason or cure…………yet. But we still try, because that’s what we do. And we never give up.

The best advice I was given while reading one of those ‘autism links’ is to love your child unconditionally. Don’t let your child think that you believe he is ‘bad’ or ‘wrong’ because he is not considered ‘normal’. Appreciate him for the awesome person that he is, and learn to love his oddness. If only others could do the same, there wouldn’t be so much emphasis on the cure.