Unmasking Autism

 I am reading a book called “Unmasking Autism" which is focused on undiagnosed adults learning to embrace who they are and not who society needs them to be. I identify with a lot of the book for people I know and am enjoying the learnings for myself. I identify as a neuro-typical person who has some quirks but I do not identify with being on the spectrum. However, I am raising a child who has been diagnosed. I believe I have a partner who fits  this book.

Dr. Devon Price, author of “Unmasking Autism" claims that masking your autism, or your differences is neurologically damaging. He states that one should just be themselves and stop hiding pieces to fit society.  This sounds amazing and I hope that one day, society can be that place. I believe that every person on the planet hides a part of who they are at some point, although I fully accept that the neuro-diverse population is required to more often. He states that Applied Behavior Analysis (ABA), which is the primary “treatment” for autism, is cruel.  The purpose of ABA is to help Autistic  children learn to fit in better with society, or, to learn the mask their differences. ABA used to involve electroshock therapy, which definitely is not okay. No parent has children hoping they will be shocked into normalcy.   

I have my daughter doing some ABA therapy.  I do not believe I am torturing her or she wouldn’t be there.  I also do not feel like I am trying to make her someone that she is not.  This is where I struggle.  We attend Behaviour Intervention (BI) because her brain has developed in ways that require assistance.  She struggles with social skills that many of her peers have.  She is rigid in her play.  These things make her feel like other children do not want to play with her sometimes. One of the skills she works on in BI is learning how play works and how other people might think. This seems like an important skill for life.  I want her to be happy, and humans are social beings. She needs to have some social skills.

Dr. Price argues that the world should meet her where she is at so that she can be herself. Does that mean that no support should be offered? I don’t want to have her suffer but I also want her to thrive.  If being taught each step of making and maintaining a friendship helps her thrive, then doesn’t that help her more than not providing some sort of intervention? The world would be a better place if we made accommodations for everyone.  Most of the accommodations that neuro-diverse children could benefit from, would actually also benefit the neuro-typical classmates.  The same can not be said the other way.

This has really made me stop and think.  My partner has a good paying job and is successful at it.  He has created a niche that works for him. However, life skills are a place where he struggles .  According  to Dr. Price, it seems like he should just be left to his own devices as long as he is happy.  The trouble is, I don’t think he is. So how do we help with that? As a parent, that’s what I am trying to avoid.  I want my child to be able to function without it hurting her. I want her to be able to navigate the world to the best of her abilities.  And I think that she might need some additional support to get there. This doesn’t make me a monster. It doesn’t mean I think my child is broken or in need of fixing. I do not try to hide who she us or to take away parts of her. But I do have her in a BI program, doing ABA.

I struggle a bit with her neuro-diversity. I want her to be as ‘normal' as possible. I do not want her to be viewed as different, even though she is. I have been debating for months if we continue BI and miss school time, or skip BI for school. I don’t think there is a correct answer.  Dr. Price would say my desire for “normal “ forces a mask onto her.  I don’t want that. But I also know that “different" gets bullied, teased and harassed. Which is worse? Masking who you are, or being bullied for who you are? To be authentically you, or to have had to learn life skills even if it was hard?

The Time to Change and Learn is Now

 I have never understood food – what to eat, what not to eat, what the body needs and doesn’t need.  Sure, I knew that fruits and veggies should be half your plate and you need 8-10 servings a day.  I didn’t do it, but I had heard that enough to know.  I knew that you needed a protein and a carbohydrate at most meals.  But that’s about the extent of my knowledge. I kind of just ate.

When I was pregnant, my diet was a problem. I had ketones in my urine throughout the entire pregnancy, which was explained to me as that my body wasn’t getting enough nutrients.  I was 180 lbs when I got pregnant, and topped out at 194 lbs, yet Illyana was born at 7 lbs 4 oz.  I had borderline gestational diabetes.  I tracked my diet, my ketones and my blood sugar levels and tried my best to do what I was supposed to do.  It was hard and exhausting.   I came out of the hospital, having had Illyana, at 150 lbs.  That stayed off for the year I breastfed, despite me eating anything in sight.  Then I went back to work, and quickly gained it all back, plus some.  Four and a half years after having my baby, I weighed 210 llbs.

In 2019, Illyana was hospitalized for failure to thrive.   She lived on milk with whipping cream in it for the majority of her calories.  The advice was to eat the same meals, to show her how to eat.   At some point, I stopped cooking two meals – one of me and one for her.  I started living on the Kraft Dinner that she would eat.  We stopped buying veggies at all because they would just go bad in the fridge.

In 2021, a friend suggested we try JuicePlus.  JP+ is a whole food supplement.  It comes in a chewable form and a pill form (and whole food based protein products).  She said that once a body starts to have fruits and veggies, it will crave more.  She said that sugar cravings would decrease.  She said it would help bridge the gap between what we were eating and what we should be eating for fruits and veggies. Health benefits galore. What did  we have to loose, we weren’t eating any!  So we went ahead and ordered.  The chewables took a bit to get used to, but I would snack on them and often Illyana will eat them.  At one  point, the rule became that she could have more candy after she ate her chewables.  She was game and now likes them, although wont eat them daily. She even decided that the child dose of 2 chewables of each of the three flavors wasn’t enough, so now eats 4 of each   Every day she does is a win though.

As for me, within a couple of months on JP+, I noticed I wasn’t reaching for my chocolate stash at 3 pm (still don’t, its now there for my coworkers).  I was having less dessert.  I had a bit more energy.   We were sold.  I signed up to be a partner and make a small commission on selling them.  Turned out that selling it wasn’t something I really enjoyed despite believing in the product (still make a commission though, if I have inspired you!).

Fast forward to 2022.  I weighed 210 lbs, the most I had ever weighed.  I was eating ¾ box of kraft dinner 6 nights a week.  I felt gross.  I was tired all the time (this has long been a complaint of mine).  I wasn’t sleeping well.  Then all of a sudden, I started having gallbladder attacks.  The ultrasound showed “multiple gallstones".  The doctor recommended he remove the gallbladder.  I was a bit perplexed by this, as I don’t eat at fast food restaurants often.  But when I remember the rapid weight loss of pregnancy, which likely started the gallstone problem and that I lived on processed food, it makes sense.  After surgery, a prolonged heartbeat interval has me being sent to another specialist.    I decided I had to do better.  I am 38 years old and do not want the rest of my life to be riddled with health challenges, doctors and specialists.

I signed up for Noom, a weight loss program that uses psychology to help make long term changes with your relationship with food.  This program labels food as green, yellow and orange.  Green foods are fruits and veggies and whole grains – you can eat as many foods in this category as you want.  Yellow foods should be eaten in moderation.  Orange foods should be limited, but are still necessary.  This gave me some good understanding of foods I was eating.   The first week of logging my food was mostly orange foods.  Green foods fill you up longer and have less calories.  This week I have been mostly in the suggested ranges, and have enjoyed a treat or two.  While I do not think that this is the best way to measure  calorie intake or the foods one eats, I appreciate the suggestions of what colours the foods are.  I often double log, also using myfitnesspal (it would be nice if they talked to each  other) to see how I did on protein and fiber content.

Now I am learning that oatmeal is a high calorie food but quinoa is low calorie.  I had quinoa and homemade apple sauce for breakfast and will likely feel full longer than if I had made oatmeal.   I had no idea prior to this.  Now I have almost cut sugar from my coffee (actually, being home this month have no had coffee).  I have a treat about once a week. In fact, the fruit JP+ chewable feels super sweet.  I now prefer the veggie one, which was the hardest to get used to.  This week I have bought eggplant, zucchini and avocado which are rarely on my shopping list.  I have explored some new recipes.  I have learned that my delicious melted cheese in a cheese bun sandwich is all in the orange zone – lots of calories without a lot of benefits. And I am often quite far under in calories but am not feeling hungry.  I am going to try to cook more often, from scratch.  I have learned that the processed meat I buy, while easy and fast, is full of added sodium and sugars. 

I wont say that I have a good understanding of food yet, but I am appreciating the changed journey. Going back to whole, unprocessed foods is part of the key.  Including more fruits and veggies is key.  Its been easy while I am off work and have nothing to do.  It is important that I find a way to continue it once back at work.  Hoping that building habits while off helps once I am back.  I finally feel like I am starting to understand my body and what it needs.  I saw in the summer, how much energy one can have with some good nutrition and exercise.  I felt like the Energizer Bunny.   One night I played a game of soccer and then came home and went for a run because my body still wanted to move.  Who is that person?!?!  That is who I want to be.  I want to make myself healthier. I want to be able to play with my daughter and not be on the sidelines all the time (I have hated this month of being sidelined).  I want to live a good, long life.

The time to change and learn is now.

It shouldn't be so hard!

 

After a long walk and a good cry, I am no longer wanting to shove chocolate in my face, but I am still so frustrated with the system.  It does teach me a lot though.  I used to judge people too much.  I have now realized that the judgement is rarely fair and that shame and judgement only hold people back from achieving their full potential.

I have, several times, tried to set up services for Illyana regarding autism.  I have a lot of funding available because early intervention is key.  But the process has proven to be so complicated and frustrating that we are no further ahead in that aspect than we were pre-diagnoses.  And at this rate, I don’t know that I am going to put anything in place.  This year of funding is almost over and despite my efforts, I don’t feel that anything has happened.

I once was motivated and called several people.  Solely online services do not appeal to me. How do you do any work with a 4-year-old virtually?  She is not going to sit on Zoom and listen to a stranger.  But I could have started my own work.  One lady I called I felt instant shame when she spoke. She didn’t listen to a word I had to say prior to making me feel terrible.  “Haven’t you ever heard of xyz”, “without these services, your child will not have the skills to succeed”.  “I expect to see your name on my list next time I look”.  Thanks lady, for letting me know that I am failing my child and she will not succeed.  I disagree greatly, but thanks for your opinion.

Another conversation included “you knew your child was different early on, so why bother getting a diagnosis if you weren’t going to do anything about it”.  Again, thank you for the shame, with no thoughts about what else I might have done, or how hard it is to get things done in a world where everyone is short staffed and underpaid. The waitlists are long.  Covid complicated things.  But yes, all my fault.

I am not saying it is not my fault.  Some of it is.  After being shamed, I wore that for a while.  Said things like “I would rather my child get no services than have to work with that person”.  And I don’t regret that.  She does not need to be exposed to people who shame.  She does not need to be shamed.

Pediatrician looks at you with a disapproving glance when you say that she is not accessing services.  She tells you the importance of early intervention.  Reminds you that once the funding expires it is gone and it is there for good reason.

People say that you must not understand the importance of early intervention, because once you see it working, you know what a good investment you have made.  They don’t acknowledge waitlists, lack of services, or anything you might have tried already.

Decide to look past the negative interactions, I can overreact at times after all.  Services in Quesnel are offered at specific blocks of time.  These blocks of time mean that parents likely cannot work.  For pre-school aged children, the block of time is 9:30-11:30.  How does a working parent get their child to this time block?  Give up every break to run to daycare to get my child (who has been there less than 1 hour), run her to program and run back to the office, in my 15-minute break.  Do it again in 2 hours.  Cannot schedule anything in the morning at work because you have to leave twice before lunch.  Now the only break you get is your lunch break, but since you didn’t schedule anything in the morning and have things to do, likely miss it to get your job done.  Once she hits Kindergarten, the times change from 12-2. Equally hard to do.  They say, ask your father-in-law to do it.  Do you think she will happily get picked up early by one of her favourite people (this likely includes the fight I will see), leave them in minutes to go to program, participate in program, and then either get picked up by him again or head to an after-school centre?  Still not sounding ideal to me.  Where is my own sanity in this?  How is it beneficial to my child to have so many transitions in a day?

There is an option to find your own people to provide the services.  This sounds good, maybe they can work around hours that will fit my life better.  But they need to be trained and supervised by the company.  Basically, I can recruit new employees for the company that is receiving thousands of dollars from me.

Others say that early intervention isn’t required for everyone.  Others say that ABA is not all its cracked up to be.  But at the end of the day, you don’t have training in what’s best, or what your child needs.  You are fumbling along, trying to do what’s best for her, while maintaining some sanity.  You are trying to be ‘just a mom’ and not a therapist.  You do not want your house and all interactions to become ‘therapy’.  But when you say that it feels like the others very much disagree with your choices.  You try to learn as much as you can, but you are not a BI and do not want to become one.

It feels like a no-win situation.  It already feels terrible.  But then they shame and judge.  I am normally pretty good about not making up stories about what others are thinking.  But those words keep cutting me to my very being.  Those words, even if they come without shame and judgement, still hurt, and still bring up the ‘not good enough’ story.  That is one that I know well and try to fight every day.

My Team Leader, who is also a friend, who has walked a similar journey, says we will figure it out.  But the idea of running around like that is stressful to me.

Our CDC consultant offers to brainstorm ways as well.  She wants to go out of her way to help (which she cannot).

Not everyone shames.  You are not fully alone, despite how it feels.  You might have to be creative.  You might have to look for ways you never thought possible.  You might need to lean on new people.  You might need to be vulnerable and ask for help. 

You need to choose what sacrifice is best for your child.  And you know that you do not know much about what she needs.  Sure, she needs you to love her unconditionally, to help her, to teach her.  She needs a mom who is not going insane by the activity level and workload stress.  But she also needs more than you can offer.

It is absolutely insane to me that this is so hard.  I also know that using the funding for the equipment you need, or to get trainings paid for, is also incredibly hard.  Today I was told it has been made even harder in recent months and lots of requests to use funding have been denied. 

This system is due for an overhaul.  I don’t know that the proposed overhaul makes anything easier (I suspect harder as there is no funding to do anything privately), but this is not working.  Getting services in place for a child should not be this much of a fight, it should not leave parents exhausted and doubting themselves.