Getting a diagnosis isn't always easy, even after you've finally secured the appointment and had the testing. Even when you really, really know yourself and know you are autistic.
I accompanied a client to an autism assessment. Right from the beginning, I could tell it wouldn't go well for her. At the end of the evaluation, the psychiatrist said that she could not be autistic because she communicated too well and gave eye contact. Sara, my client, suggested she had learned how to mask at a young age. This psychiatrist had never heard of masking and did not like her authority being questioned. My client left with no diagnosis. This was especially painful and difficult because Sara's family, who liked to say that "everyone is a little autistic," felt vindicated. What a frustrating outcome and Sara's mental health certainly took a hit. She needed for her parents to understand her challenges and why, and not being able to get the autism diagnosis made everything worse.
In a Sacred Space Coaching YouTube interview, I asked Clinical Psychologist Julie Kangas if practitioners misdiagnose or don't diagnose because patients may not presenting with the "traditional" autistic traits. Dr. Kangas shared a story of meeting with a client who requested a neurotype testing referral. This client masked her neurodivergent traits and nearly fooled the doctor. She gave her client the referral but was thinking," she isn't autistic."
Years later Dr. Kangas ran into the young woman, who had received her autism diagnosis. After so much suffering, this client could now conceptualize everything she'd experienced through the lens of her autism. Dr. Kangas was so glad she'd honored her client's wisdom and experience, instead of listening to the voice in her own head. It was a big lesson about how differently this young woman's life might have gone without the diagnosis and better understanding of her neurotype.
Many more studies need to be done on women, especially BIPOC women. Our current data does not show the total picture of what autism can look like. Dr. Kangas has been presented with enough real examples that have made her reexamine possible biases and question the available data. I hope other therapists will do as she did and consider their clients' self knowledge and dig deeper into their own biases.
Autism & Self Compassion
A diagnosis can be validating and allow for more self compassion. A late-diagnosed autistic can look at how differently things could have gone with getting an earlier diagnosis. I've certainly seen my share of clients who were grieving what could have been with an earlier understanding of their autism. The podcast Squarepeg dives into stories of late-diagnosed women and non-binary people, episode after episode. So many autistic folks share how much easier life would have been with an earlier diagnosis.
Dr. Kangas suggests honoring the voice that tells folks that "maybe I do process the world differently. That doesn't mean I'm bad.That doesn't mean I'm broken. It doesn't mean I need to toughen up. It actually means that maybe I need honor some of things that very naturally occur for me and they are not going to change. They are not going to change from willpower or through exposure, exposure, exposure. No, that's always going to be a stressful thing for me and maybe I can be gentle with myself and build the accommodations or the life that work for me."
I appreciate Dr. Kangas talking about self compassion. After poor childhood experiences full of trauma because they are unique human beings, clients and peers sometimes come to me emotionally beat up. It is not easy to be in a neurotypical world. Having more compassion for yourself as you get help and heal can make a big difference.
Autism and Your Mental Health
In my first meeting with a potential client, we may discover coaching might have to wait until the individual receives help with mental health challenges with an autism-informed therapist. My first step will be to help them find the right therapist. Clients have told me it really helped to meet with an autistic therapist, someone in which they could really relate. Looking for a autism-informed therapist? These are the resources I've discovered:
NDTherapists.com (many of the therapists are neurodivergent and some are autistic)
NDI Directory - Neurodivergent Insights Directory by Dr. Neff
Inclusive Therapists - Justice-minded therapists/sliding scale
Therapy Den - Neurodivergent-affirming Therapists
Sometimes, my autistic clients have worked with a therapist OR are currently doing that work. As a coach, I can work alongside their therapist. We both become part of their village of trusted individuals.
I do my best to create as safe an environment as possible. I believe in folks while they learn to believe in themselves. I am honored when people trust me enough to do this and I never take that trust for granted.
Autism & California Residents
For folks trying to get an autism diagnosis in California, our local regional centers may be able to assist you with getting a free diagnosis. California has 21 regional centers distributed throughout the state. For folks living near Sacramento like me, the closest regional cener is the Alta California Regional Center in Roseville, California. This link can help you find your local California regional center and get your autism diagnosis free of charge.
The state of California also has a self determination program that provides out-of-the-box financial support for autistic adults (and children). With SDP, you determine what the specific supports you need and create a budget to get those supports paid for by funding set aside for you. In other words, the money is not coming out of your pocket.
Several coaching clients see me weekly; their SDP pays for the coaching as well as other expenses necessary for a better work and personal life. In another case, a gentleman has a passion for hockey. His SDP plan pays for his skating training, his uniform and fees to join a hockey team, and other expenses associated with making this dream come true. He continues to have funds budgeted for his hockey team fees and he now works for the rink near his home.
This link will take you to an explanation of California's self determination program. The first step for getting started is to get a diagnosis if you don't have one. Again the regional center can help with that. The next step is to listen to their online orientation. You'll find information about that in my article.
**If you live in Maryland, there is also a program called the Autism Waiver, offering financial support for services for autistic folks transitioning out of high school. You must apply by age 21.
**Listen here to my interview with Dr. Julie Kangas. If you like it, please share and subscribe so that I can reach more folks!
Autistic with a PDA profile? Consider joining us for this free session:
