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Autism Interview #97 Part 2: Kmarie on Advocacy and Developing a Positive Autistic Identity

This is the second part in a two-part interview with Kmarie. Kmarie is an autistic wife, mother, and blogger from Canada. Her beautifully written blog details a variety of different life experiences, including (but not limited to) living with Asperger’s, INFJ personality, low ferritin, and chronic illness. Last week Kmarie discussed her relationship with music, the importance of self knowledge, and her struggles with executive functioning and language. This week Kmarie shared advocacy advice for parents who are trying to raise children with positive autistic identities.

What mistakes do you see neurotypical autism advocates make?

Not listening to actual autistics. Yes, we are diverse. Some of us believe in the social model of disability while others the medical model…I am the in-between group that leans more to the SMD but believe in the validity of both to a degree….but our divergence on topics should not stop people from listening to us and gleaning information on how to parent or care give to those with autism.

I recently read a Psychology Today article that had me enraged with the insinuation that we needed to be eradicated. I have to stay away from the politics of it all because I become locked into more language difficulties when I am upset. But the biggest mistake I see is supporting places that give more voice to the eradication of autism or not listening to those who actually HAVE autism.

Another mistake is getting bogged down by politics and identity language. I know it is an important part, and for some autistics, it is especially crucial for their healing, but overall, I feel this should be later on the list of importances, and first and foremost, it should be about support. Support, understanding differences, and validating before improving. Most of all, they need to know they are loved for whom they are, not for what they could be. Their souls deserve to know that being accepted is part of their parents’ choice.

What have been the most important factors in helping you develop a positive autistic identity?

I can remember years ago, reading Aspergirls by Rudy Simone. That forever changed my life. Her approach was so laid back but relatable. I find my certain concoction of whom I am is helped more within my favourite fantasy books in the YA 9-12 section. Percy Jackson books also helped me see the hero within my learning disabilities. I suppose I am easily positive. Cynthia Kim from ‘Musings of An Aspie’ became a friend, and she wrote Nerdy, Shy and Socially Inappropriate which changed my life too. Sam from Everyday Aspergers is also a friend and was a HUGE part of my positive Autistic journey. Finding them was one of the best things that ever happened to me. Before then I was reading mostly “professional” literature…Tony Attwood etc…,but they linked me up with other people on the Spectrum.

Also, seeing autism manifested differently in my children, and their beautiful, insightful souls has also been a huge part of my positive autistic journey. I also need to stay away from autistic blogs that focus on language, identity politics, and hard hitting issues. Not because they are bad…they are needed too and I cheer them on in the background for the most part…but because I start to lose focus of the good things. I also have memory issues and speech problems of my own and have been corrected by others on how I refer to myself. I don’t appreciate that aspect. I try my best, and it will fluctuate. As I am easily positive, I can also easily derail. It is why I stay away from the news. It’s not because I am choosing to be ignorant. I make sure I educate myself in varied ways, and stretch my mind…but it is because I am heavily empathic and easily take on someone else’s anger (Even if it justified and right…It’s not mine…) Being an extreme introvert, I am a hermit on many levels, and I have to protect my space in order to keep my innocence and positivity. Honouring my boundaries and need for space, kindness and tolerance in that regard has helped me have a more positive identity.

What advice do you have for parents trying to raise their children with positive autistic identities?

Respect the sensory. I know many parents cannot take their children out of school, but if there is ANY way that is possible, it is amazing what the home environment can do…if it’s a healthy one. And if not, make the school day shorter, find sensory safe spaces often, make the home magical and healthy to come home to. I was astounded the second year my children were home at the differences in whom they became. Their communication was clearer, they were more confident, they became happy within themselves, less sick, less anxious, less depressed…and all of this was because their sensory was under their control. We decorated their rooms the way that suited their personalities, and we made sure to include sensory items. I wrote a post about creating safe havens that has been helpful for some.

I have written also written posts about Sensory Overload that many parents of Autistic children have found especially helpful. My post about Sensory Overload at Christmas expresses how being Autistic still affects even favourite holidays that I enjoy thoroughly. I explain Sensory Sickness with the example of one Halloween in our family along with tips and tricks to see the signs of “sensory sickness” early, which is a step up from Sensory Overload. In THIS post, I break down effects that are a part of sensory overload in general holidays. For example; odours, relationships, outfits, anxiety, food intolerances, etc., and I give examples of what that looks like in our family and solutions to some of these issues.  Finally, I wrote about our family’s experience at the zoo, which was a little piece of torture on earth, especially at the time when the children were younger (I still loathe the zoo). Many Autistic children do not have the words or emotions to clarify what is happening in these scenarios. If I am being honest, I didn’t either until I wrote these posts (many of which were written a few years ago, but still apply for any parent who is looking for guidance in these areas). There is also the other rare time of sensory deprivation which I wrote about HERE, although for some Autistics that is more the norm of their sensory experience. For myself, Sensory Deprivation, or what I call my “robot mode,” is rare. 

Another aspect of helping children with autism manage the sensory is diet. However, I do not believe the claims that diets “cure autism.” Often what is happening when people claim their children were “cured from autism” from a dairy-free, gluten-free, sugar-free diet is that they are simply managing the sensory better. We have been on that diet for 5 years now, and what is actually happening is that it takes down a lot of the sensory within (from the gut)…which enables clearer communication at some points and more comfortability. But we are still the same people. We still have our unique way of looking at the world. It’s just that our guts are in less pain and permeability so our nerve pathways are open to us handling a bit more out in the world. What works for one child, may not work for another. But in general, find the sensory that is overwhelming or underwhelming your child and try to remove a lot of it or work around it because then they will have more room to express themselves instead of just trying to cope. Also, if they can’t choke down a food, it is easy to find an alternative or creative way around it. Food is important though in terms of helping them be under less sensory distress. Basic respect is often forgotten and autonomy is not given to children…and children deserve to be part of their own care and to be able to have a say in it. 

Next I would say, read to them beautiful, positive articles from actual autistics. My daughter is reading Aspergirls right now, and she can’t relate to the parts I did, but the parts she can make her light up with happiness. My son loves to hear Musings of an Aspie articles…especially ones that focus on Executive Functioning and understanding how his brain works. We celebrate our autistic identities. I let my children refer to themselves however they want to be referred to. “Aspie” is akin to “dearest” in our home. (Our son was diagnosed at age 4 when Asperger’s syndrome was still in the DSM5. We still use the term even if it has gone out of use in the professional world or not liked by others. In our house, it’s a term of endearment.) I feel it is important, like personality typing, to learn the struggles and benefits of BEING in the world. Being Autistic also fits into that.

 Also, when the children are in a meltdown, give them safety, love, and care. I’ave written about how to deal with meltdowns by other Autistics and included links to similar resources HERE. Know that they are not acting out of spite, but out of pain. Read up on other autistic thoughts on meltdowns. Give them code words for when the world is getting too much or when you are out of the house, and they need to keep their dignity, but leave a situation.

I also feel that Autism often comes with co-conditions. It is important for caregivers and Autistics themselves to understand the co-conditions too. For example, I have Dyspraxia. Often, most of my frustrations and issues people pick up on are actually Dyspraxic attributes and NOT Autistic. There are many “cousins” of Autism that overlap, and it is important to research all that apply to the child. Autism sometimes will not address the struggles the child may encounter, nor the great differences that require celebration!

My youngest has multiple learning disabilities and slow processing speed, but he is NOT Autistic. However, my older two are Autistic, and they can accomplish aspects of life which he can not, but he also can work around issues they cannot. My daughter has the co-condition of OCD Anxiety, and my eldest son has Dyslexia along with Autism.

Sometimes, parents mistake seizures for an Autistic trait when it is separate. Physical issues can go along with Autism, but many physical impairments are co-conditions. While it is true that it feels like our family lives at the Dentist, and we DO have weird, odd physical ailments and react to medications differently due to our different brain wiring, some of that can be attributed to the MTHFR gene that can also go along with Autism. Autism is different for each child, and it is important to remember that, as a famous quote says, “If you have met one Autistic child, then you have met ONE Autistic child.” Some will be sensory seeking while other children will try to avoid most sensory. Figure out your child’s preferences and read from other autistics about how to respect their journey!

Also remember that Autistics are not often age conscious. My children generally prefer to play with younger children or discuss with older adults. They often prefer to sit in with the adults, and that is perfectly ok.

To sum up, I would say to concentrate on education from other autistics, support their differences, and celebrate ALL that they are…the struggles, the gifts, and the ordinary…so they know they are worthy of being loved. I was very excited to explore your site as I think you are doing an excellent job of organizing a space for this. It encourages me and gives me hope for the future of my children.

KMarie often selects song lyrics at the end of her posts. Below are her choices for this interview:

You Have More Friends Than You Know – Glee

I hope each Autistic child and adult know that who they are is ok!

“Be brave. Be strong. You are loved. YOU BELONG. Some day soon, you will see, you’re exactly who you’re supposed to be. And you don’t have to go through this on your own. You’re NOT alone. You have more friends than you know. Some who surround you. Some you are destined to meet. You have more love in your life. Don’t let go. Give it time. Take it slow. Those who love you the most may need more time to grow. It’s going to be ok. You have more friends than you know.”- Glee

“Be who you are. Learn to forgive. It’s not about who you love but how you live.”Glee

The Wizard and IWicked.

All the songs from Wicked hit my soul during my diagnosis, but these lyrics had me weeping “Did that really just happen? Have I actually understood?

This weird quirk I try to suppress or hide
Is a talent that could help me meet the Wizard
If I make good, so I’ll make good
When I meet the Wizard
Once I prove my worth
And then I meet the Wizard
What I’ve waited for since: since birth!
And with all his Wizard wisdom
By my looks, he won’t be blinded
Do you think the Wizard is dumb?
Or, like Munchkins, so small-minded? No!
He’ll say to me,
“I see who you truly are – A girl on whom I can rely!”
And that’s how we’ll begin
The Wizard and I
Once I’m with the Wizard
My whole life will change
‘Cause once you’re with the Wizard
No one thinks you’re strange!
No father is not proud of you
No sister acts ashamed
And all of Oz has to love you
When by the Wizard you’re acclaimed
And this gift – or this curse
I have inside
Maybe at last, I’ll know why
When we are hand in hand
The Wizard and I!”

Often Autistics go through life trying to suppress quirks or feel like (at times) we have been cursed because we are so different, but to be celebrated? That is always a beautiful shock to us! When we are filled with hope that someone likes us FOR our differences – that’s amazing.

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2 Comments

  1. Kmarie

    Reply

    Thanks again for asking me to be a part of your most needed blog! This was a great experience for me and helped give me back a bit of my voice!
    I hope these articles can help parents cut down some sensory…I wish stuff like this would have been known when I was a child…I would have been WAY less sick and traumatized by so called normal events!
    ( PS the gut part was repeated twice in two paragraphs…I fixed it on my site but it’s here- sorry I didnt catch that before!)

    • Jenna

      Reply

      Thanks so much! And I fixed the content repetition. Definitely not something you missed–it was my fault! WordPress was duplicating every block I deleted during my revisions, and I think everything was beginning to look like a blur to me as I read and reread…Thanks for catching this. And thanks for your time. You have a wonderful blog and such a beautiful way of expressing how you live. I’m so glad to have connected with you!

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