Opting Out of Autism: The Way is Shut

After reading an article by another autism mama on whether she was spoiling her child versus accommodating his special needs, I sat down to cry. Here was a woman writing into my life, articulating her parallel parenting existence. And she was receiving positive feedback on her parenting! Imagine my surprise to discover we share not only the same struggles, but the same first name with the same spelling? When validation comes, it is unexpected. When it comes from a woman with my own name, it’s a sign. At least, I’m going to choose to interpret it that way. I’ll tell you why.

Our autism journey has been a very rough ride, and not because we face the challenges of autism the world has come to expect. My son is high-functioning. But what does that mean?

It means Noah doesn’t flap. He is articulate. He is athletically gifted. He is highly intelligent. Noah can make eye contact when in conversation. He has good handwriting. He has a deep friendship that has lasted years. He is outgoing and has no problem making new friends. In general, it is not obvious to the public that he is on the spectrum.

Opting Our of Autism-The Way is ShutSome people need it to be obvious. I want to talk about that–about the implicit and explicit judgment Noah faces as an individual and I face as a parent due to our autism not being popularized by media or light-it-up-blue blurbs.

“High-functioning” for us means, while Noah may have excellent gross motor skills, team sports or any competitive activity is a no. His thinking is black and white, so competition means enemy, and that frightens him and puts him into defense mode.

It means no crowds. The world is loud and full of terrors (i.e. smells, motion, lights, textures) , all of which Noah sees on high-alert and cannot sort. Have you ever had a panic attack? Imagine what the world looks like at its height and start there.

No leaving the house unless it’s absolutely necessary. This means no plays. No concerts. Very few movies as a family. Unless one parent is prepared to leave with Noah. This is what Noah and I did halfway through a sold-out-months-in-advance Yo-Yo Ma concert.

When we do attend any of these spaces? There is a “release” period afterward during which Noah is highly agitated and decompresses by running/dancing around wildly, shouting and/or hyper-focusing on a book or video. A lot of times it means a fight and him being sent to his room to calm down, which allows him the space he needs but also reinforces his low sense of self-worth.

Why? Because “high-functioning” also means separation anxiety. And the ability to see that he’s not quite doing things “right” but not how to correct course to blend in a neurotypical world.

It means the inability to accurately identify threats.

The continued inability to “love” more than one friend at once when all are in the same space. In the past, this has resulted in him identifying one friend as adversary, because if you’re not friends you are _________. Were you able to fill in that logic worksheet blank?

It means literal thinking about the real world.

It means adaptive thinking about video game worlds. Video game worlds have a specific set of rules that do not change. The real world offers no such security, so everything must be taken at face value in the moment.

It means sensory overload in public spaces, and that means high physical energy, anxiety, struggling to self-regulate, the need to get. out. And when it’s not possible to leave, the use of morbid verbal and physical threats to create an end to the situation.

I could go on, but there is no need. This list shows why my son is received publicly as “bad” and privately as “a nuisance.”

And it is why my hands-off, calm responses have been deemed “spoiling” or “enabling.” I’ve been condemned for “failing to discipline” my “brat” who deserves “his ass beat” by passing strangers rather than being celebrated for providing security for my child by not rejecting him when he’s overwhelmed.

I grappled with the topic of spoiling versus accommodation well before we gained confirmation that autism resides in our home. Over the years I have faced numerous rejections of both my abilities as a parent and of my child. These never stop hurting.

Yet the feedback I get from the team of professionals who work with my child in my home and in their offices is consistent: Noah is lucky that I am his parent because I pay attention and work to meet him where he is. I acknowledge that he can sometimes meet me and sometimes needs an escort. I have been told by multiple therapists “you are doing everything right. Most parents we work with don’t put half this much energy into their child.” I am supporting, not enabling.

I wish the world would do the same. Approach my kid as though he’s a person, not some broken thing to be fixed please. He doesn’t need fixing. He needs understanding.

Rejection of Noah’s failure to blend usually comes in the form of a snippy “I guess there’s no hope then” when I tick off the list of suggestions that do not work (as if the other person knows my child better than I do). I brush those off. The heavier reaction is a closed door. Entry denied.

This is the reason I cried. The other Shawna was opening a door simply by being another parent and confirming every child is different.

When someone closes the door, they are giving up on my child. Writing him off. I can grok but not accept that because I am intimate with the havoc autism can wreak in a home or business, but it never stops hurting. It is also a person giving up on me and my ability to parent. Giving up on understanding. Saying we are too much and so there can be no more try, only do not.

It is someone saying I am spoiling and they will not help me by enabling me further. “I can’t be party to that.” This has been stated directly. The person didn’t try to understand autism. They opted out.

It is a friend with a typical family saying in other words, “Autism makes my life too hard so I am opting out.”

It is a place of business saying, “You make us uncomfortable. We don’t care why. Don’t come back,” and opting out.

I don’t get to (and wouldn’t) opt out even though I support others knowing their limits and protecting their needs. I have had extremely low moments when I wanted to quit my family too. But failure is not an option, so I’m still here, still pushing, still adapting. I’m still opting in. Right now, I’m in deeper than ever because I’m realizing I know what autism is like from the inside, which makes those closed doors that much harder to face.

So. Validation from another autism mama who shares my name? I’ll take it. It’s a sign that I’m not alone even if the way is shut and I am told I shall not pass. I’ll find another way. And I’ll say thank you as I do. To her and myself. Thank you, Shawna.

If you would like to know more about our life with autism, click here.

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25 Discussion to this post

  1. A says:

    If I plagiarized this (which I won’t! I promise!), people who know us well would believe I had written it. Every. Single. Word.

    Thank you for your validation. Validating you back.

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  2. Steve says:

    Thank you for writing this. My son has traumatic brain injury, not autism. But the behaviors and struggles you lay out here, while not exactly the same, are very familiar. I’ve been struggling with the whole balance recently of what is supportive vs. what is enabling. I appreciate your thoughts. It is good to not feel alone. Last week we ate dinner at a pizza shop and my son was very wound up. Thankfully we were the only ones in the restaurant, but he was not well behaved (running around, being very loud, etc.). As I was trying to corral him he got angry because he said the people behind the counter were staring at him. I tried to explain that his behavior warranted them wanting to keep an eye on their restaurant. After we left I went back in and apologized to the lady who served our food saying “I want to apologize for my son’s behavior. He has some mental health issues and he’s having a rough day.” She said “oh, no problem. My boyfriend’s son is on the autism spectrum and some days kids just have a rough day.” My embarrassment lifted. It’s good not to feel alone.

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    • Shawna Ainslie says:

      Thank you for taking the time to share your story. I’m so glad you found understanding instead of judgment. There really is so much good in the world. I hope you continue to find it and that we connect more.

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  3. Any says:

    Opt in mom here!! I have been told that I am spoiling my daughter by “giving in” to her meltdowns. If they want to listen and learn I will explain hfa and why I am choosing my line of intervention. If they don’t there is nothing I can do. I feel bad for people who are opting out because they are using out on some great kids!!!!

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  4. Mary says:

    Have you been watching my life? I identify with every word. Thank you!

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  5. Beautiful message – thank you!

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  6. Lauren says:

    My son, our experience – to a tee except he does hand flap. Another challenge I have felt is that it took 5 years to get a diagnosis. 5 years of the wrong therapy, school environment, my treatment of him – I was made to believe he could control his behaviors. The ADOS assessment is terrible – it uses generalized characteristics of autism that are not always the case. I saw a cartoon the other day that summed it up perfectly – the spectrum is not linear with LFA on one end and HFA on the other. In fact, the term HFA and LFA is harmful. The spectrum is like a color wheel where ability to speak (and speak very well) does not mean that the individual is not struggling immensely in other areas. It does not mean that they can just “buck up”. Then add the fact that there are so few services for kids like ours, especially ones that focus on their capabilities and not behaviors. I hear you, Shawna.

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  7. God! I wish you were my Mother xxxx
    I am high functioning on the spectrum and you just validated me!
    Thank you for proving to me that it is not my fault I was born in the time I was and had the parents I had.
    This is an amazing piece and I shall be sharing it far and wide xxxx

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    • Shawna Ainslie says:

      Charlotte,

      What an amazing comment. I’m happy we get to be artist-sisters now. You are amazing and I am thrilled this has helped you feel the validation you deserve. I only wish parenting felt as natural to me as writing, but I will keep showing up and keep trying. Your response has reinforced that commitment. Thank you.

      Much love,

      Shawna

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  8. B says:

    Your Yo-Yo Ma concert experience made me smile in recognition. Our daughter has struggled with some aspects of the “spectrum”–intense social anxiety, hypersensitivity to stimuli, tantrums and rage, difficulty reading social cues. She’s now in college and in a wonderful relationship, and has worked bravely and hard to function well in a “neurotypical” (I like that term) world. But some things will never be easy, or the same. When she was little, she was the kid who was horrified to have her face painted, who did NOT want to “meet the cast” after the show, sit on stage, or help the magician with his trick. And just recently, we got tickets to see tap-dance legend Savion Glover. The show turned out to be a dimly-lit, VERY intense “experimental” evening of constant percussion and tapping, and we had to leave less than halfway through; it triggered full-blown panic in her. I now know that “it is what it is,” and we all laughed about it in a (quiet, empty) coffee shop nearby. But if I had a dollar for every person who told me what I should “just” do for her tantrums and refusals in childhood, when it seemed she had ODD or some damn thing no one could name…well, it would pay for college. I was a hardass on her not hurting the feelings of others–probably was pretty brutal in demanding some apologies for things she couldn’t help–but otherwise, I chose my battles, and still do. You sound like an awesome mom. Follow your heart.

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    • Shawna Ainslie says:

      I find it very hard to separate myself from the desire to “get my money’s worth” and the reality that my son actually absorbed enough of an experience that it’s all worth it. However, I also have a major problem with groups so I am learning not to force myself to stay in a situation that I will later have to recover from. It is very worth it to choose battles. You sound wonderful. Thank you for reading and sharing your experience.

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  9. Jsackmom says:

    I’m so glad you wrote this I’m one of those Moms with that child that gets whispered about in public. His autism is newly discovered but always known about by me. He’s high functioning in certain situations but when sensory overwhelmed it’s a game changer. He feeds off of his environment and if it’s hostile he reacts in turn. Like you I’ve heard of all the things I should be doing to discipline him in his world of rigidity. I’m grateful that him and his therapy team see what I’m doing right. He is my child I’m his advocate and safe place not an enabler. He is my joy and happiness not something or someone I have to fix. ❤️

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    • Shawna Ainslie says:

      Yes! I am so happy to hear other parents saying, “No, he’s not broken. He is wonderful.” I know it’s difficult to change perspective, especially in a culture that the practice is we all conform to one expectation of ability, but compassion is a worthwhile practice. It sounds like you’ve got it down.

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  10. DeeDuck says:

    You are a good mom. I, too, make these decisions every day. If I am wrong then at least it is on the side of love.

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    • Shawna Ainslie says:

      I always has to come from love. I make the wrong choice sometimes. We all do. But, like I tell my kids: It’s okay to make a mistake/feel angry/etc. It’s what happens next that counts.

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  11. Maria says:

    Thank you for writing this. For all of us with children whose autism didn’t take their ability to speak, it is heartbreaking to see how harshly the world treats them when they are overwhelmed. I’ve heard all those same things, and that he could be “cured with strict discipline.” It’s almost as if the ability to speak and learn eye contact means that everything else that makes his life so difficult sometimes can just be punished away. There’s little empathy sometimes for the things he can’t do because of the things he has worked so hard for and now can.

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    • Shawna Ainslie says:

      There is so much assumption attached to certain abilities. I had to overcome quite a lot when my son’s younger brother surpassed him in some developmental areas. I was ultimately able to recognize that we all develop at our own pace, but my child is one of the biggest kids his age. Size complicates assumptions from the public as well. It’s a tragedy that we can’t look for the person inside the action. Thank you for sharing your voice here. <3

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  12. Norah Colvin says:

    Thank you for sharing so honestly, Shawna. We need mums to explain to us. We don’t know if you don’t tell us. We haven’t walked in your shoes. Yours is an important story to tell.

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  13. Autumn says:

    I am not sure I could love this piece more! It is amazing! I have (and I am sure will continue) to feel all of these same things that you do. I am constantly being told that I don’t do enough for my daughter but on the other hand (and usually by the same people) I am told that I don’t discipline enough, she is a brat etc. and that I do too much for her. Some days it’s laughable how ignorant people can be but most days it hurts. You are a great mom <3

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