“There comes a time in life when the impossible is no longer impossible. It is necessary for the sake of survival.” Jim Irion, March 7, 2024.
Every day, I feel like I am staring out through the eyes of a waking nightmare. Every day, I struggle with constant reminders of the life I lost because autism was neglected. Now, the trauma of trusting society’s major institutions colors my judgment. Twenty years of denial as a suicide attempt survivor taught me that problems are not solved by neglecting them. At least not if anyone expects to get anywhere in life.
Not a day goes by where I do not question everything. Should I have stopped applying for work to spend seven years trying to figure out my mental health? Was it my fault that it took that long? Does autism actually need to be accommodated? Why me? Now I look to trauma experts to be certain of everything that I share. It is easier to not speak up, but you might not be better off remaining silent or unaware when it comes to autism.
If you are actually autistic, not knowing may expose you to a range of disruptive social and economic problems. That is why I support mindful self-diagnosis until a quality professional assessment can be attained. I would be the first to trust professionals more intelligent than me. But my life experience has taught me to advocate for our well-being first because they cannot all be trusted yet. And to think I was assessed based on a hunch.
Additionally, not knowing you are in denial of needing legitimate support will increase the chances that your quality of life will be reduced. As a result of my late diagnosis, I never integrated socially to establish the fulfilling social connections necessary for strong mental health. I also never integrated economically and have no financial stability at age 42. This is based on painstakingly objective observations.
I would like to be as rosy-hearted and cheerful about autism as the next person. Being optimistic is eventually necessary to have hope and a positive outlook on life. But the fact of the matter is that not all our lives are fulfilling, happy, or financially stable enough to be independent and self-sufficient. I cannot afford to be complacent, or I will risk wasting more of my life and neglecting autistic people whose needs are time-critical.
It is true that not every autistic person will have the same support needs. The ones I have started to identify are likely to be common needs of priority concern. I trust experts like Dr. Damian Milton and the late Dinah Murray, not because they are autistic or appear to sympathize with our plight. Their deductive reasoning is sound. The second step in advocating for your support needs is to be prepared before asking.
But from who? What are the pitfalls to be aware of? If you are receiving generalized mental health treatment, you would request accommodations from your healthcare provider. If you are employed and recognize the need for accommodations, you would request them from your employer. However, contrary to governing authorities who insist we trust the laws, your requests are not necessarily going to be taken seriously.
I base this on my personal experience. In February 2020, I requested help from a receptionist for scheduling. She made a slanderous, false accusation. After I filed an affirmative action complaint in March 2022, I was shocked to find their CEO lied on the findings report about trying to contact me. It was then that I realized it was his voice on their telephone support service. Therefore, trust not, fail not, is fair wisdom.
And this was before I even knew about the DEP theory. In the US, you have to already be employed to request the kind of sweeping accommodations I did. An untold number of us may still be unemployed. So it will not work. Most other institutions will likely balk at the idea. Too much time and money. Unfortunately, the chances of success do not improve when autism is taken into consideration.
You may be treated with prejudice and discriminated against simply for the autistic way in which you communicate. Thus, outside of active employment, the most practical place to request accommodations for support needs is through your mental healthcare provider. This is also where you may be most likely to talk with someone about your support needs. Problems with communication are validated in research, thanks to Dr. Damian Milton.
In his Double Empathy Problem Theory, Dr. Milton outlines what he refers to as the double empathy gap. A gap in understanding one person’s methods of communication compared to another can cause miscommunication to occur. Between neurotypical non-autistic people and neurodivergent autistic people, the gap is what causes cross-neurotype communication problems. Some people harbor prejudiced views, which can make matters worse.
Mind the gap. Anyone in a position of authority who is not supportive of autism can discriminate against you. Take no chances. Supervisors, managers, administrators, corporate executives, counselors, psychologists, psychiatrists, and even a case manager can discredit autism without accountability. If they are not supporting you in a timely manner, it is best to formally request accommodations as follows:
By formally, if you are able, I mean to write or type a request specifying, within reason, what you feel you need. Make sure it is dated. This way, you have documentation of how long your request takes to be fulfilled. Ask for updates on a weekly basis. This will keep advocating for your autism support needs as a known priority and help to leverage any strain on your mental health. Be sure to save a copy of your request for records.
If you are unable or too stressed to do so, rely on trusted relatives, guardians, caseworkers, or case managers to assist you. In the US, Centers for Independent Living may be able to assist as well. Regrettably, accommodations are not guaranteed to work. Not every country has the legal precedence or the willingness to abide by disability accommodation requests. Rely on advocates to share your story so that it is known.
Unfortunately, not everyone feels safe enough to request support, even discreetly. As an experienced mental health advocate, this has been one of the most common problems that I have observed. Requesting accommodations, for example, from employers or education support, has been met with intimidation, discrimination, and retaliation. Parents of autistic children know this well. Just ask a SEND parent from the UK.
Cross-neurotype communication problems must be taken seriously. Being prepared will empower you with the knowledge of experience. Practice what to say before any communication. Ask yourself if you could be misunderstood. Have a trusted friend or case manager review your tact. Before you make your formal request, point out that you are autistic and communicate differently. Document any accusations to protect yourself.
Virtually anyone who is not familiar with or accepting of autistic communication can cause cross-neurotype miscommunications. These can lead to prejudice or discrimination, which will cripple your standing in your community, as mine was in 2018. Thus, when taken seriously, anything from healthcare to dating, continued employment, and job interviews are affected. This can cause serious disruption to our lives at any time.
I do not want to be so distrusting of people who may be able to help in my late-diagnosed autistic life. But my lived experiences reinforce a need for caution. In order to address my support needs efficiently, I must take autism seriously. It is not just about me anymore. Autistic people everywhere are at risk of social and economic hardship if nothing changes. I refuse to neglect my people, whom I have learned so much from.
When it comes to autism, until we truly understand it ourselves, we are at a serious disadvantage. I requested the occupational accommodations because we need them. There is no question of what can happen if they continue to be neglected. I am living proof of what happens when monotropism and employment are neglected. I am living proof of the consequences when diagnostics are neglected. Suicide is a credible risk.
We are living proof of the Double Empathy Problem Theory. Although I have not succeeded yet with accommodations, I advocate for them because I now know what this is like. To be left behind. To be traumatized. I am beginning to learn what we actually need. Trauma-surviving advocates know trauma has an authentic way of sharpening your perspective. Accommodations need to be taken seriously now, for all of us.
Knowing is half the battle. The other half is doing something about it.
#AutismAdvocacy
Reread my Autism Advocacy Series here in Knowledge Is Power, Part 1.
