Hello and welcome to the neighborhood (see my biođ)! Today's entry is to share a bit of my experience with getting a diagnosis (roll credits amiright?). An Autism diagnosis that is. I first inquired about Autism in the early 2000s only to be met with a blankish stare and a WebMD printout.
My next inquiry was an ADHD Facebook group where I mentioned what I now know are Autistic traits. Some people suggested I get assessed for A*perger's (I will not spell out that outdated term. My reasoning will be for another post at another time) and some didn't know what I was talkinâ bout so were unable to help.
(Side note: parentheses are like pockets for your thoughts and tangents)
I meant to inquire about Autism with my therapist but at that point I was unknowingly being transferred to a new therapist and the transition threw me off. After I'd gotten used to my new therapist I was yet again transferred to another therapist. That therapist had been trying to encourage what is known as masking.
read more about that here: https://embrace-autism.com/autism-and-camouflaging
I was unaware of it at the time but I knew I was uncomfortable and I stuck it out because I wasn't assertive enough to bring myself to express my discomfort. Eventually, she left and I got yet another new therapist. During the pandemic, during a teletherapy session, we watched a video about identities and their significance. Sum'n bout the video shook loose the idea of me being Autistic and with the encouragement of a friend I asked about the possibility that I was Autistic.
My therapist basically said I wasn't what she thought of as âa person with Autismâ (eww no person-first language round these parts). She told me to discuss it with my psychiatrist and when I did that I was met with even more invalidation. âWhat good would a diagnosis be at your age?â âYou know there are no medications for Autism right?â Look, all I wanted was to be pointed in the right direction! Instead I was invalidated left and right.
My psychiatrist also didn't know who to refer me to anyway. She suggested that I call my insurance to see who they'd cover. I called and over the course of almost a year I was given nearly 20 phone numbers and addresses.
The first try I thought would go well but it didn't. I had an appointment for months and a week before the scheduled appointment it was cancelled but I didn't find out til the day of. It was a whole mess. I felt defeated.
So I started over and ended up on a wait-list even though it was too far of a wait for me but I stayed on it. They just needed a referral from my psychiatrist. Had the first place been more upfront about needing a referral so much time could've been saved.
While waiting, I found an Instagram post from Oliver (myautisticsoul) that you can view here: https://www.instagram.com/p/CW_oZlELWxC/?igshid=MTc4MmM1YmI2Ng==
and utilized Psychology Today's psychologist search. Thankfully I found two locations that were both run by women who had an understanding of and experience with Autistic women. I emailed them both using a tailormade email from the template linked above. One responded pretty quickly and told me she wasn't taking any new clients at the time. The other was available. I took the time to look she and her establishment up. I was worried that I wouldn't be listened to or taken seriously but in the end Marty* did both of those things for me. She listened to me and took me seriously. The process was so exhausting and anxiety filled.
Around this time last year I was diagnosed Autistic! I texted my partner the news. He was supportive and even participated in the process. I was so relieved, flooded with an assortment of feels and had so much to process. It felt heavy yet somewhat lighter to have clarity. It wasn't just ADHD but autism as well. ADHD may have masked my Autistic traits and that's partially why it wasn't identified sooner. It also didn't help that I was diagnosed with ADHD at a time where one couldn't have a dual diagnosis of Autism and ADHD.
The family members I grew up around noticed traits I had but simply ignored, accepted (that I was weird), and/or chastised me for them. I don't fault them or me because you don't know what you don't know. As long as this post is it's just a snippet of my thoughts throughout the process. Without overwhelming myself I'll simply end with a thank you!
PS I got to tell my dad about my Autism diagnosis before he died. His response is probably my favorite and I cherish it so much. RIP dad.
XO Rabia
This is a lovely post and a sad one at the same time. I love the transparently but sad that our medical system makes it so hard to get they thatâs needed. Iâm glad you were able to find someone that fits your needs
Wonderful post. My son Orion is autistic and he is the sweetest most artistic, lovely human. His mind is wonderous and I learn so much from him. I have wondered if I am the one who passed on the trait as I had difficulties growing up that could be explained by autism. Women are so overlooked and we have a difficult time getting the assistance and diagnosis we need. I mean, those needs don't stop when we get older and having to mask can create so many complications later in life. I am so glad you are on your way to self-understanding and healing. Many blessing and hugs sister!