Parental involvement in diagnosis

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Those of you who are officially diagnosed as adults. How much involvement did your parents have.

My Mum is biased and not a very reliable narrator of history. She does think I'm autistic and will ham it up if asked about it. She has been known to revise her version of what really happened in general and not accept the facts.

My Dad is a bit clueless, so I doubt he'll be much use either.

Can I be diagnosed without their input?

Probably. If you live independently, they would have your friends answer most of the assessment questions, rather than your parents. Your parents might be asked background information---like when you started talking, walking, etc. And how you were, in general, as a child.

My dad is deceased. My mother is 83 and I haven't lived with her since the 1980s. She has signs of early dementia, she's an alcoholic, and she can be emotionally abusive. She calls autistic people "ret*d". We have a complicated relationship and I'm mute when I'm with her. Most of the time I can't even say hello because I freeze. There was no way I could say "Hey, I think I'm autistic, so let's have a heart-to-heart conversation about your perspective on my personality from 40-50 years ago".

I managed to get primary source information from her house -- my baby books, photos, old home movies which I transferred from film projector to computer files, and of all my school reports. My daughter asked her a lot of questions about my childhood, without saying why , and I also talked to my older brother. He and I spent our childhood together and he was a huge help. He remembered me as a very stubborn, tense child who had meltdowns when the family routine changed or any time my family travelled. He said my relatives were well-aware of my "special needs" and that my mother was ashamed of me when we had group gatherings. His memories validated what I'd always felt, but I didn't know it was common knowledge or a topic of extended family involvement.

I used all the materials, reports, video links, and information to complete my Developmental History report prior to the assessment. The doctor had given me over a hundred questions and I supported each one with full anecdotal stories or support material. My DH was 188 pages when complete.

I went to the assessment by myself, which was fine. My diagnostician said it's common for people my age to lack parental involvement. She was pleased with the material provided especially since a lot of it was written by school teachers or other third-party people (e.g., my childhood speech pathologist). After the assessment my doctor sent several questionnaire tests to my daughter by a secure email link. At the time of my assessment I had lived with my daughter for 22 years which is longer than I ever lived with my mother. My daughter wasn't allowed to confer with me on the questions, and they took a few hours to complete. I had some similar questions to do at home as follow up. My daughter and I sent our answers to the doctor but also an autism research group in America, for double-blind comparison.

So that's the long answer. The short answer is that no, you don't need parental presence in your interview. They might send your mother some questions, similar to what they sent my daughter, but I wouldn't be too worried about their input. Diagnosis is primarily based on your performance in verbal / nonverbal standardised tests. Your opinion about whether or not you are autistic doesn't really factor in, and the opinion of other people ... even less so. It's a very objective assessment based on hard data and test scores, rather than what people "think".

My diagnosis (San Diego 2003 Asperger's) only involved the neuropsychiatrist and myself

The patients parents might be dead, in jail, not in contact, or otherwise not available or reliable

I was diagnosed at age 64. Both of my parents contributed.

My Mom passed away more than thirty years ago but still contributed to my assessment. She kept a journal of my first year. Some years ago my Dad asked if I wanted the journal and I said "No, you can toss it" but one of my sisters immediately took possession. When I decided to get an Adult Autism Assessment I suspected the journal might interest the Psychologist so I told my bride I'd have to contact my sister to see if I could get the journal...it turns out I was wrong. Unbeknownst to me my sister had previously passed the journal on to my bride so the journal was readily available for the assessment. From the Psychologist's comments later I conclude she went through the journal carefully; she said it showed I met or exceeded expectations for a baby's development (first words, etc.). My diagnosis was Autism Spectrum Disorder, Level 1 (Mild) but I think it was the journal that allowed the Psychologist to note in the Psychological Evaluation that I also satisfied criteria associated with what previously known as Asperger's Syndrome.

My Dad also contributed to my assessment. He is still alive (and quite old) and was 89 when I got the assessment. I cautioned the Psychologist that (1) Dad's mind was still clear but he tired quickly and sometimes his attitude could be mischievous, (2) I was a kid about sixty years ago so we couldn't expect Dad to remember too much about that time (I know I don't remember that much!), and (3) I was the eldest of several children so it would be possible our childhoods could be bit blurred in his memory. The Psychologist didn't expect too much information from Dad; she gave us a short list of questions for him, we asked him over the phone and sent the results to the Psychologist. I think his answers strengthened the case for my assessment, I gather some of what he reported was consistent with Autism.

Additionally, it was Dad who gave me the clue to investigate Autism! I have two siblings who live near him and, of course, they see him frequently. One is a sister who works as a nanny for special needs children. She happened to have one of those children with her once when she visited Dad sometime in 2018. The reports I later received had Dad saying things like: "We had a kid who was weird like that, xxxxx" and "That kid is doing the same weird things xxxxx used to do!" I probably looked confused when I got this report because my sister had previously mentioned the kid to me and said they thought he might be Autistic. That was enough of a clue for me to look into Autism and the rest is my medical history.

P.S. I must have made quite an impression on Dad. In 2018 he saw similarities between what that kid was doing and what I had been doing in the 1950s!

P.P.S. I get along great with Dad and apparently he likes that kid. Dad says that kid is welcome in his house any time.

My parents weren’t consistent caregivers, so their input was not requested. However, my grandmother unintentionally (being from a generation that wouldn’t really know anything about ASD) mentioned a few anecdotes that I wasn’t aware of that really stood out. She died a couple of months before my assessments, so I just passed along what she recalled.

Mostly though, the only outside reports involved were that of my husband; since we’ve been together for nearly 25 years, his is the most reliable perspective.

the ideal people to interview about your aspie diagnosis would be your parents because they have known you the longest. I had to use by sister, and my girlfriend because one parent was dead and the other demented at the time.

Shrinks might be able to decipher whether your parent is trying to "railroad" you into a diagnosis, or not. Interesting question.

My sister was used not my parents.

I got AS from my mother, and she was always very careful to avoid a diagnosis. Inquiries into my quirks always ended abruptly if they asked about my parenting. Finally, when she was dying, and my NT sister was still hoping she'd say something normal, I did another search, and found a list of Aspie traits that explained both our lives.

My parents were involved- apparently, in the UK I couldn't receive a formal diagnosis otherwise. They answered questions by phone, a bit grudgingly. They have carefully avoided the subject ever since- I think it doesn't fit in their worldview.

My parents are dead. The psychologist didn't know that, but she never asked anything about them or for their input.

When I was still wondering if I could be autistic, I asked my mother if she had any doubt when I was little, or if something was said when my IQ was determined, or even if I was actually diagnosed without knowing and the diagnosis being hidden for whatever reason. I asked her to read documents about autism and answer the questions of the self-test for parents of small children using her memories. On the first appointment with the psychiatrist, she was required to fill the same kind of form (maybe it was the same one).

My father isn’t aware of my autism and he likely never will (my parents have been divorced for 20 years). I stopped seeing and talking to him (for my own good) before my diagnosis but after the discovery but I don’t want him to know anyway. He still contributed because when I was around 10 he told me that when I was a baby, I would rarely cry when hungry or when my diaper needed changing. I thought it was a sign of autism.