Life after Autism Diagnosis
When I started voicing my opinions as a late-diagnosed autistic person, some people accused me of making my autism diagnosis as an identity. For beginners, I prefer to be an autistic person rather than a person with Autism. I understand that it is harder for an outsider to understand why this matters. In an ideal world, differences would be respected and accommodated. But the world we live in is anything but ideal. To be a “person”, one needs a good enough environment while growing up. If that is lacking, the personality that the others perceive is a collection of maladaptive coping mechanisms that served well for survival but were not made for living a healthy and fulfilling life. Some people go with the person-first approach and it is the individual’s choice. My life made sense to me when I realized that I was autistic. Until then it was like living in somebody else’s body.
My struggles, after two years of this knowledge, are still the same. I have family and friends who refuse to acknowledge and accept this. They want me to go back to how I lived before because that serves them better and there is zero effort required from their side in maintaining this relationship. It is easier for them to blame it on my depression rather than to make accommodations for me as a disabled person.
My Autism is a disability for me. This means that I struggle far more than the eyes can see. It was not even clear to my therapist how I was struggling, but the doctor who assessed me for ASD saw every bit of struggle I was having daily. If my assessment scores were an exam paper, I’d have aced it. I am a person with high support needs who has been living with no support throughout out life with the added trauma of marginalization by socio-economic status and gender. Sometimes I feel it is a miracle that I am still living even though I never had any will to live.
Since this is Autism Awareness month, some conversations that I had over the last two years kept coming back to me and I felt reliving those moments again in my body. I have been silenced by the below comments throughout the last two years in spaces that I thought were safe. As per a trauma therapist, “Half safe people are not safe“ and I understand why I am feeling so low even now. When these conversations happened, I didn’t know how to respond and this had led to another layer of trauma to heal from. I am just getting it out here so that my body and mind can recover from at least some part of the trauma even though these incidents keep repeating even now.
1. “You are normal” — Don’t ever use this to a person who is going through a mental health crisis, not just an autistic person. What is normal is always debatable. This is such a triggering word when you are trying to find out why you are so different from others.
2. For god’s sake if you are not in a listening space and have unresolved trauma, stay away from the person. The last thing the person needs is a guilt-tripping from you saying “You are making me suicidal” and shutting that person into an even more depressed state.
3. “Everybody is a little bit autistic” — Really? Would you go and identify as an autistic person in public? If you wouldn’t do this in public, then you are not autistic! Please stop belittling the struggles we have been through.
4. You don’t have full-blown Autism — This one was from a psychiatrist and was an eye opener in how lacking the entire medical profession is when it comes to understanding Autism. If you don’t behave in the stereotypical way in which an autistic person is portrayed in movies and series, your struggle is not valid as per such doctors.
5. “High functioning autism” — Used by many friends as if they are complimenting, but is just a way of invalidating our struggles and neglecting our needs.
6. Brainwashed into Autism or has cheriya(small) autism — Told by an Ayurveda doctor after he asked me about how much I scored in tenth standard! This one is entirely on me! What was I even thinking when getting admitted into such a place? I don’t know how he treats any kind of illness is beyond me.
7. Positivity force — The behavior therapist asked me to say “I am not dysfunctional” while I was admitted to the psychiatric hospital. Again it was my lack of knowledge and outside support that led me to this. I could not sleep after the first therapy session and it was just another way of invalidating the struggles I had been through.
8. I have seen some videos about ASD — If the autistic person shared with you some resources, please go through them. There is so much misinformation out there and you must listen to the channels an autistic person identifies with. Otherwise, you are just another “woke” person with some misinformation rather than an ally.
9. When someone shares their diagnosis with you, at least acknowledge it. If you don’t know what to say, please say”I don’t know what to say”. Trust me, an autistic person knows the feeling of not having words much more than you do.
This is just a personal summary of what I have been through post my diagnosis. I continue to learn and make accommodations for myself and when I have the energy I speak up for myself as well. There is only one person in my life who is there for me in this tough time. It still is a lonely journey and on most days I am hanging on by my brittle fingernails. So when someone says they are autistic, please believe them! Will you?
