Parents say I am "NT"

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Isabella, I swear you and I are sisters!
I would love to read your notes if you are ok for that. We have so much in common that I wonder if our childhood experiences are also similar. I wasn't picky about clothes or posture though but I did and do have a peculiar head tilt from genetic hypertonia and that is also very apparent especially in my nursery school class picture where all the kids are looking straight at the camera guy and I have my head turned to the side looking at him through the corners of my eyes!

And Sharon, what Isa said is definitely true. At your age, and at the age I got diagnosed, I got mine a month before turning 48, no doctor is going to ask to talk to your parents.

Parents (any parents) filter their children's behaviour through a narrative. It's the way we all make sense of ea others' behaviour. Even the best parents do it, and need to. Unfortunately it means that sometimes the narrative they have means they fail to account accurately for the cause of things.

I was talking to my mum the other day and she had just been reading an article on selective mutism. It had never occurred to her that it was a sign of anxiety. She thought I was just quiet, and since in her mind I was a shy kid, that didn't ring any bells for her.

I guess the thing to remember is that all parents miss things. Back yourself and go see someone. See if you can get your parents to talk about those aspects of your childhood according to their narrative and they are more likely to be open about it than if they feel like they're being contradicted. I've found that with my family. They're very defensive about having missed the autism and will shut down any conversation about it, but are getting better at it if we don't talk about that label and just the traits themselves in a way they can recognise it.

It's frustrating because I wish they'd just try understand, but it is definitely getting better after 20 months since I first told them.

My parents didn't believe me, either, but mainly because they knew very little about HFA/Aspergers.

I get that, because it took me 46 years to work out what was wrong with me, and I hadn't connected autism to myself either until I dug deeper into how Aspergers presents in women and discovered it came under the autism spectrum. So there's no way they could have connected the dots with the limited knowledge they had.

Also, because they only had 2 kids and my brother and I both showed a lot of traits, to my parents AS was our family normal. We were all smart and sensitive and it was the NT kids who seemed superficial and incomprehensible and generally weird

I didn't need to get my parents involved in the assessment, but even if they are involved in yours, I wouldn't worry about it. Once they are faced with specific questions over how you behaved, their answers will reveal the AS even if they don't realise it.

the part about you having social communication and executive functioning issues.also the part about you being a sensitive,depressed and anxious child.that caught my attention

darkwaver,

I grew up in that time period as well, when the only descriptions of autism were of clinical cases in institutions.

I am not so sure. I know that with my parents, when I have talked to them about my Autistic traits in childhood, and even in early adulthood, they were so far in denial that they actually lied about my experiences without realizing it. In their accounts, the facts of some of my most poignant experiences changed so extensively that I might have not even been there. I have a very visual long term memory. I even remember what I was wearing during certain events when I was less than two years old. But my parents can often be in such denial that they will say things that don't even match up chronologically.

For example, my mom claims that I dropped out of ROTC in college not because I was having Autistic issues and physical issues with my hypertonia but because I was very active in a church that I had become a part of in college. She will stick to this story as if her life depended on it. Problem is that I was in ROTC as a freshman in college and only lasted about three months. I never even knew the church existed until the middle of my sophomore year when a met a friend for the first time who was a member and who invited me to a campus Bible study. But my mom will swear up and down and back to town that I left ROTC because of my commitment to the church and not because I was having all kinds or issues with Autism and hypertonia.

And she will do that about everything. Nothing that has happened in my life that did not go according to what she wanted can have anything to do with Autism. The fact that I can't keep jobs, not Autism but is because I am lazy and make bad decisions and just don't want to work. The fact that I could not finish college, nothing to do with Autism, I'm just lazy and make bad decisions. My mother will argue that I don't remember significant events in my life but she does even if she was not even there when they were happening and she will argue with such authority that it will totally shut me down.

So I am not convinced that parents in denial can really help with a diagnosis.

How do we all know our parents are right and that we aren't dealing with false memories?

This is something that goes through my mind a lot like what if I am just crazy and I am just making it all up?

My mom has said things to me like "You only remember your old house in Portland because of the videos" or that I remember my high chair or stroller because of the videos so one day I started talking about this red car my dad used to have and my parents don't have any photos of the outside car. I haven't heard from my mother since that I only remember things as a toddler from the photos and videos.

I know my parents are wrong. When she starts changing chronological dates to prove her point, there is not doubt of who is having false memories. I can pull up official recorded dates of things and she will still argue that I am wrong.

Also she can't remember specific things about an event if she wasn't even there. She has specific memories of what she thinks I did as if she were present when I was halfway across the country. She has memories of what she thinks people in my life said or did when she has never even met them or ever spoken to them.

She will argue with me that when I was physically bullied and beaten up and sexually molested that I am wrong and that I don't remember what really happened. She wasn't even there when those things happened and I remember them vividly as if they had happened this morning.

When I came back from the Special Olympics World Championship Games in 2017, I was featured in newspaper article in my city. It actually made front page full top half of the paper. In the interview they had asked me about being Autistic and I told them some things that I had experienced growing up with Autism. These are very typical things that most of us have all experienced like not having friends in school and all that kind of thing. When my mom read the article, she was livid and said how dare I lie about all these things!! And she also said, if any of those things were actually true, it wasn't because I was Autistic but because I made bad choices all throughout my life.

Kind of like Samari's quote to Scar in The Lion King as he was trying to kill Simba by trying to push him off of Pride
Rock exactly like he had pushed Simba's father off the cliff. Samari said, "You said you did not make it to the gorge in time." [to save Mufasa] Scar says, "Yes, that is correct." And Samari responds, "Then how could you see the look in Mufasa's eyes?"

You know your parents best so you have to use your judgment in how involved you want them to be in your diagnostic process. But know for sure that you, as an adult, have the right to not have them involved at all. I know for a fact that if my parents had been involved, the stress and emotional and psychological trauma that that would have caused me would have been unimaginable and that could have severed our relationship. And both sides probably would not have been able to recover.

I can't tell you if you have ASD or if you're NT but neither can your parents. Get a professional opinion.

Thank you, all.

@ASPartOfMe, I am on both sides of that. I am the "sandwich" generation that way.


@skibum, thank you. I just reserved the book at the library. I think I've seen it but found the title intimidating - thanks for the encouragement. Right there with you on overbearing delusional parent (my mom once denied something right as it happened - "I'm not going to look because you are lying" - the physical evidence was literally under her nose, at her feet; she promptly turned around and left so she wouldn't see). So sorry for the abuse that you, I (and others) suffered.


@IsabellaLinton, did you already have the school reports or went and got them? I chuckled at your thoroughness; I tend to do things in a "big" way also.

A double blind test would be reassuring; I'll ask about that.


@plokijuh, yes, that!! My mom repeated that many times about me so "shy". I thought of myself as social and confident - but from my earliest memories, I'm either talking "too" much or not at all.


@MrsPeel, I am 1 of 2 siblings and my sisters shows traits. Great advice!! !!


@vermontsavant, thank you for your perspective.


@League_Girl, teasing: Both are wrong - it's the Matrix. Seriously: When I ask myself: is it this or that? My answer is typically: it's both. I just listed 10 visceral memories I have around ages 3-5. My mom has a traumatic memory from age 18 mos, so she can't judge my memories.


@livingwithautism, I hear that they can't tell either. Ironically, I already have a diagnosis "mild mood disorder" from 20 yrs ago. Rhetorical question: Comorbid, or not? A diagnosis is in part merely a sign of its time. To some degree, ASD is the sign of this time.

As for me, in reading the letters I found yesterday, I discovered my grandmother (brilliant, but cast entirely as "crazy") could see words and hear sounds as "whole" concepts, I wish she had been born a different culture and time (and gender), so that she could have thrived. And then there's my mom (brilliant, but cast mostly as "crazy") and there's me.... passing... sort of.

My mother kept all my school reports in a treasury type of album. The movies were on 1970s filmstrip so I had them transferred to DVD, then downloaded them, then put them on YouTube, then created links. I forgot to mention that I included excerpts (scanned pages) from my teenaged diary, with references to my emotional state and my social deficits. My work evaluations spanned several years and pointed out things like my lack of eye contact and my tendency to withdraw, which had been referenced as early as Primary school by teachers.

The completed book was such a big file size that I couldn't email it to my assessment doctor. Her email wouldn't allow her to open it in case of a virus. That's why I had it printed in colour and bound, and sent to her by courier a month ahead of our meeting. The printer did single sided pages so unfortunately it came out heavy, about 3" thick on good paper. I told my assessment doctor that I didn't expect her to read it all, because I mostly wrote it for myself. I'm still embarrassed that she has to keep a physical copy of that size in her files. Whoops.

Re: Double blind
After my 10 hour assessment I had about 3 hours of questions to answer at home by internet, which were sent directly to an autism statistical centre separate from hers. I think it may have been in another country but it was hard to tell because I was only provided a secure link access. Concurrently, my relative answered questions online without my input. It was all measured together and weighed against the results of my in-person assessment. I don't know if this is a common procedure, but it's the way my diagnostic centre provides accountability in all assessments.

Sharon, thank you for your response. It meant a lot to me that you can relate.
Definitely get Tony's book. It will really help you.