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.
Some 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.