Neurotypical Gatekeeping of Autism Causes Harm
It’s human nature to want to compare our struggles.
“Ben said he’s tired. I don’t think he knows what tired is! I’m tired but I just get on with it. You don’t hear me complaining!”
“Amy said she’s got depression but every time I see her she’s smiling. I can’t smile like that when I’m depressed.”
I get it. It can be toxic, but I get it.
If someone claims to have the same struggles that we face but acts differently to us, it can be confusing. Some people feel threatened. They feel that it somehow takes away from what they are facing. They are afraid that they may be expected to act differently just because someone else can act differently. Unfortunately, this kind of comparing can lead to “gatekeeping” diagnoses.
“If someone acts differently to me, they can’t possibly have what I have.”
“If you really had what I have, you wouldn’t be able to do what you are doing.”
I see this happen frequently to autistic people. I’ve had it happen to me on numerous occasions.
“You can’t be autistic and have a job!”
“My son is autistic and you don’t know the kind of hell we go through.”
“You must be very mild!”
This doesn’t usually come from other autistic people. This comes from people who are neurotypical. Neurotypical people who are determined to gatekeep autism diagnoses. I believe this can come from a place of fear. They have family members who are autistic or they are carers for autistic children. They see their children struggle. They struggle also. They think that if someone who appears to them to function “normally” claims to be autistic, no one will ever know the struggles their children face. No one will know the struggles they face. That is terrifying to them.
I know the struggles your children face. I know because I was an autistic child who struggled. Now I’m an autistic adult who struggles. Just because I was diagnosed as an adult doesn’t make my struggles any less. I still lived my childhood as a struggling autistic child. It still happened. I wasn’t diagnosed as an adult because “autism is so mainstream now.” I didn’t “jump on the bandwagon.” And no, I don’t think autism is a “fashion accessory.”
There was one word that explained my whole life. Who wouldn’t want to know what that word was? Why would you want to gatekeep that word because someone you know appears to have it “worse?” Why do I have to behave the same way as someone you know to deserve the diagnosis?
If you compare two people who struggle with depression, they will both behave differently. They will both appear to function at different levels. Does that mean that one is depressed and one is not? If you compare two cancer patients, they will both behave differently. One may appear sicker than the other. One may have more energy than the other. Does that mean that one person has cancer and one doesn’t? Of course not. We are human. We have personalities. We have all learned different coping mechanisms. We are all wired differently. Of course, we’re not all going to present in the same way. That doesn’t mean that one person’s struggles are valid and another person’s struggles aren’t valid.
It would be so nice if instead of gate-keeping diagnoses, we had some empathy (I know, something I’m not supposed to have, right?) If we could just say “welcome, I know how you feel.” If we could accept that other people face difficulties without feeling threatened. Without thinking other people’s suffering takes away from our suffering. Finding out that I’m autistic saved my life. Knowing that people want to gatekeep that is crushing.
Getty image by Oleksandr Shchus.