Now that A is older, I find it exhausting at times to have conversations about him with potential care workers, therapists, etc. I believe it is because people assume a lower level of support needs, or “high functioning autism,” which is a term we do not use. As R said the other day, “they think A is going to be a me.” Yes, exactly this.
I have really searched myself to see if the disconnect is due to how I speak about A. But that’s not it. I am always upfront about his ability to communicate and to show what he knows, his level of compulsion, how he spends his time, and what things cause peak distress episodes. And then I am usually met with a dissonant reaction, wherein the person either a) assumes I cannot possibly be speaking so “disparagingly” of my own kid, or b) that they will come meet him and prove to be the autism whisperer he has been missing in his life, and soon, voila, his inner savant will emerge, and he will become a world chess champion, or a skilled artist, or a mathematician. Gotta find that “SUPER POWER” that ALL autistic people surely possess, except that their intrusive behaviors get in their own way.
To this I used to say Okay, go ahead and try. I no longer say this. I no longer give in when people demand progress reports about his development.
One: Because my kid is not a thing to be experimented upon.
Two: He deserves to be accepted the way he is, and his life has inherent value even if he cannot contribute to a world that prioritizes only those who earn money.
Three: It is cruel to impinge on his precious downtime unless he is going to enjoy the interaction.
Four: When it is the wider society that refuses him access to low key extra curricular activities that he might like to attend in his own community, plus offers such limited and irregularly scheduled options to kids like him that it is impossible to acclimate him to them, I reject with scorn the damaging notion that it is he who needs the intervention.
And yet. Every time I have these conversations, I feel pressured to toss aside the red flags I am picking up on in how the person dismisses my description of A.
Do I believe he might be able to have a job in the future? I do not know the answer to this.
Do I believe paid work is the only path to a meaningful life? Decidedly not.
Do I wish he could work and live on his own and have friends and a family? Sure, my life has been just as steeped in ableism as yours, so I wish many things for him. I also dream of a time, which may never come, when my husband and I could have time to ourselves and not have to be so vigilant. When we didn’t have to be A’s only companions.
Do I think that will happen? No, not without the one on one caregiving he will always need. Someone will have to take over the tasks we do. Or several someones.
Am I scared that I’m missing some vital piece that might magically turn his life around? Absolutely yes. This is because I too have been brought up to believe that disability is a blight, and that magical transformation to a point where he is basically someone else will remove the significant challenges from his path. I have worked hard to unlearn this belief.
Ultimately, this is the wasted time and wasted tears, isn’t it, rather than the therapeutic modality not pursued? Seeing how awful the world is to A, and locating the onus on him to transform into someone who won’t need people so much that his life would be materially and emotionally scarred by the neglect and abuse of others. The ability to keep others at a remove and still thrive is a luxury.
Sometimes, when I seek out potential people to work with him, all I am looking for is a babysitter so we can have a break. Or a music teacher so he can learn to play the drums, because he has such perfect rhythm. Or a movement therapist who can help him process his big, overwhelming emotions. Or a techie person who can teach him more keyboard skills so he can communicate in a more free form manner. We can perceive how much more nuanced his thoughts are these days, and we are dying to know him through them.
But I am tired of meeting people who have not done their own training to learn how to work with older kids like him. And who assume the parents are the obstacle. Even people renowned for working with autistic people usually turn out to be a) better with small children, and b) mostly at ease with more verbal, independent children.
Don’t get me wrong, I am grateful when people want to try to engage with him. But I do not need to be more grateful or fawning than any other parent who is seeking out someone to work with their kid.
My child is profoundly disabled. And will always be. Part of people’s disconnect is probably as simple as seeing how articulate we are, and not being able to connect the dots. This is what is insidious about anti-disability thinking. We are so frightened of the reality that we would prefer that parents paint rosier pictures. We want parents to concede that this reality is falsely constructed and that that is the reason for a supposed lack of success.
When I talk practically about A, I do not love him less. I am not disrespectful of his diagnosis or his person. I love to see him happy. But if you cannot even listen when I talk about how autism manifests in his life, how will you stop judging, or making it about your own fear or bias, or coercing him to change? How will you be able to refrain from causing harm?
And if you won’t work on your own skills, how will he flourish without community?