Parents concealed autism diagnosis from daughter for 15 years; 'I wondered what was wrong with me.' + UPDATE
"My parents withheld a diagnosis from me for fifteen years."
cuevadanos
I [F18] had an interesting childhood. I spent my early years being taken to several neurologists and psychiatrists because I had severe developmental delay.
At first I was told I had a neurodevelopmental disorder (ASD) but my parents dismissed it and sought another opinion. I’ve always been told the diagnosis was actually incorrect because it wasn’t carried out properly. I was 3 years old at the time of the diagnosis.
My parents keep all their medical records in a box in the attic of our house. My medical records are also there and I check them from time to time. Today, I found my ASD diagnosis report and read it.
Seven tests were carried out to diagnose it, by psychologists, and one of the tests involved my parents. The report clearly states I have ASD. There is another note by a psychiatrist that also states I had ASD when I was five years old. My speech therapist’s reports also say I exhibited symptoms of ASD. There are no other documents related to the ASD.
It seems like this condition is lifelong and does not go away. I still don’t fully trust/believe the diagnosis, especially after a lifetime of my parents pretending it wasn’t there, and it makes me wonder if it was a valid diagnosis.
However, all the signs point out to my parents deliberately hiding this from me for fifteen years. It’s not a condition that will kill me, but it would’ve been nice to know when I got bullied, or my mental health got worse and I wondered what was wrong with me.
I don’t know if I should tell my parents, or I should tell anyone, or I should tell a doctor, or what I can do with my shiny new (actually really old) diagnosis. I am at a loss and it is the second time my parents withhold a medical diagnosis from me.
Here were the top rated comments from readers in response to the OP's inital post:
V3r1ty
I wouldn’t say “nice to know”. I would call them out for parental neglect. But get a professional opinion behind you first. Don’t face your parents with accusations alone, because you will just face the same willful ignorance that make up their reality if you do.
rigidazzi
I'm sorry your parents denied you information about yourself. Whether it has impacted your life or not - and I suspect it has - you deserved to have that information and context about your own brain.
mstwizted
You know better than us if you are likely to get anything positive out of confronting your parents. You are 18 now, and can seek out a confirmation or dismissal of this diagnosis if you want.
If you do have ASD, it can help you figure out your own reactions and feelings and you can work with a psychologist or therapist in whatever areas you want. If that’s not something you can reasonably do right now, you can always do it in the future.
Five and a half months later, the OP returned with an update.
cuevadanos
It’s almost been half a year. I ended up confronting my parents. I am 18F. Shortly after I wrote that post, I set out to find out if the diagnosis was true. I found and called the doctors who diagnosed me.
I met with professionals. I even made a two-hour trip to an ASD association before work (I had a summer job at the time). All of these confirmed that the diagnosis was true. I was offered retesting but it’s no longer free as I’m now 18.
I hadn’t thought of confronting my parents because I was scared of their reaction. On the day I left to go to the association I left home very early and my mum noticed my absence. I was very scared. I told her a lie at first but then told her the truth and explained everything to her.
She denied I had ASD at first but then she changed her mind. She said she knew all along and nobody had actually suggested the diagnosis had been incorrect. I asked her when she’d planned on telling me. She said she didn’t know. She offered me some emotional support.
My dad was involved in the conversation at some point. He denied everything and brushed me off as being overly anxious. He then asked if I wanted to drop out of university and go to a psychiatric institution.
I love my parents, but I don’t know how to feel. I resent them a little. I feel like I should’ve been told at some point. A lot of things in my life, especially in my early childhood, make sense now.
But maybe they would’ve never made sense if I had not discovered my old diagnosis. Sometimes I think I could’ve had a better life if I had known and received support.
Here were the top rated comments from readers in response to the OP's update:
LatrodectusGeometric
"He then asked if I wanted to drop out of university and go to a psychiatric institution."
Well I think we found the main problem. It’s dad. Consider throwing him out?
SpicySweett
People on the Autism spectrum are not automatically shunted off to psychiatric institutions! What the literal eff is he talking about?? These parents are awful, there’s so many helpful skills OP could have been taught to get through school easier, among other things. Just gaslighting her for years. I’d go no contact.
RevertereAdMe
This makes me so sad as someone who was diagnosed with ASD (and ADHD) in my late 20s. I always feel like my life could have been so much better if I'd known earlier what the hell was wrong with me and why I always felt so weird and different.
I've heard stories of parents hiding their child's autism diagnosis from them because they don't want them to be stigmatized or bullied, and I do understand the intention there, but it can do so much lasting damage.
The low self-esteem and depression that can come from feeling so alien and not being able to comprehend why can be devastating. I really hope OP is able to start healing and understanding herself better now that she knows.
peter095837
Any parents who withheld serious information or diagnosis kindly should step on legos forever. That is just cruel.
missshrimptoast
As a late diagnosed AuDHD human, this fills me with rage. If OP was assessed that thoroughly and at such a young age, then there is zero chance that she couldn't have used support. Emotional, educational, effing anything. But instead her parents gaslight her. Eff people like this. They're selfish and cruel.