As I stared at the conversion of embrace-autism’s CAD to Rupiah’s total price for autism screening and diagnosis assessment, my heart sank. 1750 CAD is 18 million and 997 thousand rupiah. Of course, I can just choose the cheaper option which is the screening since it only cost 550 CAD but even then, it’s around 5 million rupiah and these numbers are a LOT. Indonesia’s minimum wage is around 4,9 million rupiah and so many people barely passed that number. I cannot find sources for the percentage of how many autistic Indonesians are employed but every country that has put out the statistics of employment rate between autistic people says that the majority of autistic people are still unemployed (ranging from 75% to 81%) and only a few are employed. Autistic people were among those disabled people with the lowest employment rate.
Not to mention a screening can take up to 6 weeks while the diagnosis assessment can take about 16 weeks. The newest research told in this article about over 130,000 in the UK are on a waitlist for an autism diagnosis while it is estimated that over 190,000 are waiting for an autism diagnosis by 2024.
I won’t ever blame embrace autism for setting up their price, in fact, their psychometrics are some of the best psychometrics we have for getting late or adult-focused assessments. From time to time, undiagnosed autistic adults in our only autistic-led community, PAI, asked where to get an official diagnosis because surprise, not surprise, everyone still needs it. Yet, neither of us can help them.
I’ve tried to look it up online, some people offered, but later I found out they are an ABA clinic with also not a very affordable price. Made sense because from what I know even getting an early diagnosis can also be pretty expensive (around 1 million rupiah) but the fact that there is a chance they will try to offer an ABA intervention and just the fact that I have to give my money to a clinic that practice ABA (not to mention I’ve looked everywhere and the licensing for that clinic is very questionable), just doesn’t sit well with me.
I will not take a chance to tell an undiagnosed autistic adult to try it out. Lately, our family has reactivated our public insurance, BPJS, and I heard early autism diagnosis and its intervention was covered by BPJS but even then it is not always easy. Kids go through extensive steps and each step has its own therapy for a trait relating to them and some of these therapies aren’t covered by BPJS.
Again, most of these therapies are ABA leaning or support ABA but they’ve created a system and it feels like a battle to just trust the system. That’s just trust, no action yet.
Another thing is the stigma and utter shame of getting one. Suddenly the term self-diagnosis is so sacred to Indonesians, eager to show off their critical thinking prowess but circling back to anti-intellectualism as every “new” term that came out like burnout is suddenly a “diagnosis” and that you should not “self-diagnose” yourself by saying you’re burnt out as only those who are professionals can determine that.
A few months ago I worked on someone’s project about my own voice book. That book consists of life stories and tellings of autistic young adults from various background and diagnostic differences. Some are undiagnosed, some have not gotten a diagnosis but have been determined autistic by their psychologist, some have late-diagnosis, and some are early diagnosed. Either way, the book was informal and their advisors only needed an expert to give a commentary.
Said expert said they support people who “self-diagnose” yet in the same breath refuse to review one of the participant’s stories because she thinks it is unethical to acknowledge someone’s livelihood and experience just because they have not been diagnosed. My friend, who led this project, explains the difficulties a lot of the participants face and this person has the gall to say that in her university (which is one of if not the only top Uni in Indonesia) they provided autism assessment and at least three adults got a diagnosis. She scolded my friend, saying the participants aren’t trying hard enough, and in the midst of it, which was uncalled for, she promoted said service because I have a feeling she was one of the assessors.
It angers me. It angers me to the bone because I know damn well that some early diagnosed kids don’t even get a proper assessment. Some got it way later during teenagehood, some went straight to speech therapy, some who clearly exhibited autistic traits were shackled and hid by their families instead of given any accommodation including a diagnosis. AFAB kids or kids who grew up in a very abusive and toxic family got every diagnosis in the DSM EXCEPT autism just because they did not exhibit autism the same way a cishet white autistic boy.
It is so ironic that I had to hear it from one of Indonesia’s known ABA practitioners about the fact that SPD always has a comorbid and that all kids that had gotten an SPD diagnosis are most likely autistic. That means, there are more kids than we thought who needed help and accommodation. I got an SPD diagnosis but I know damn well I’m autistic as fuck and that every knowledge I gain and every piece of advice I got relating to autism and then accepting myself as an autistic person is what got me through life but I still grieve the previous years, I still grieve my childhood and the fact that my needs were not met.
It also angers me that all of this feels like a game. I followed various clinics, NGOs, and well-known practitioners that work mostly with autistic or other neurodevelopmental ND folks and to this day non of them opened up about or talked about giving autism late diagnosis assessment or services. No articles, no webinars, no seminars, no panel discussions, not a single form of socialization or education. We are all in the dark and only those with privilege can get a diagnosis and even then there is barely anything they can gain after.
We have a high rate of suicidality and even though a diagnosis is not a one solution to all, it is a step. Every day time is ticking and every day there are so many autistic people contemplating and attempting suicide.
What is this dystopia? Where us just existing becomes a nuisance? Where it almost feels like an elaborate plan (which is not surprising considering the psychology industry’s eugenics history) to eradicate us.
Especially Indonesians… I know we’re just starting out but please just please give us a chance.
Wandervergent 