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Diagnostic Question

Strong Sad

Active Member
I’m being referred for diagnosis, and I have been asked to bring someone with me who can account for my early childhood. This is a bit of a problem; I’m 39 and the only people who are still alive or part of my life since childhood are my mom (who is mentally unstable and who I am not sure will understand “the process,” whatever it is), and my sisters. However, my sisters were also kids when I was young (kinda how being siblings usually works) and I question their ability to remember me honestly and to account for their younger brother objectively. Is this typical for the diagnostic process? How have you navigated through this choice? I don’t want to end up misdiagnosed cause my mom is nuts or because my sisters are all “yah - he’s just a weird younger brother, you know?”
 
I’m being referred for diagnosis, and I have been asked to bring someone with me who can account for my early childhood. This is a bit of a problem; I’m 39 and the only people who are still alive or part of my life since childhood are my mom (who is mentally unstable and who I am not sure will understand “the process,” whatever it is), and my sisters. However, my sisters were also kids when I was young (kinda how being siblings usually works) and I question their ability to remember me honestly and to account for their younger brother objectively. Is this typical for the diagnostic process? How have you navigated through this choice? I don’t want to end up misdiagnosed cause my mom is nuts or because my sisters are all “yah - he’s just a weird younger brother, you know?”

The woman who diagnosed me gave me a detailed questionnaire to give to family and friends re: symptoms of autism that they noticed in me when I was a kid up to present day. It was a bit helpful in validating a few things, but she said that I know myself the best, so ultimately my thoughts and feelings were the ones that mattered most.
 
I was in my 50's when I was diagnosed and had no one from my childhood present at my appointments. My husband/partner of over 30 years came with me.

Siblings of a similar age group/same generation, in my opinion, are not a reliable source.

I am estranged from my parents due to childhood abuse. Had they been a compulsory factor in my diagnostic process, I would have told the diagnostician that my parents were dead. Thankfully my explanation of being estranged was accepted without question.

I spent a significant amount of time prior to my diagnostic appointments writing down events, memories, my behaviour at certain situations and just how I viewed the world in general as a child (and as an adult). Having this 'list' really helped me as I have a tendency to 'go blank' when I feel stressed/anxious.

There are countless people in the position of not having a living parent, or their parent(s) are ill, unstable, estranged etc. More and more people are being diagnosed later in life and not having a parent to give their account doesn't make the diagnosis less valid nor should it prevent or hinder you going through the process.

We know how we feel, who we are and how we've been viewed as 'different'.

You
are the best person to speak about your experiences.
 
I am 65 and recently diagnosed. One of my parents is alive, but during the process there was no talk of consulting her. My wife of 19 years was in all the meetings and gave valuable but occasionally painful info about how I had been and how I had reacted to situations which she noted.
 
When I was doing my testing for my diagnosis they also told me to bring a family member who’s known me since I was a child. But this was an issue because my parents refused to seek help for me when I was younger and they refused to believe anything was a problem. It’s only now that I’m an adult I have started to advocate for myself and my mental health. I ended up bringing my best friend of 7 years to the testing. she filled out a questionnaire and was there to share her perspective on things. maybe you can bring a friend who’s known you for a while as well if you explain your situation to the person who will be carrying out your testing. I hope it works out.
 
I was diagnosed at 58 and had no one who knew me as a child.
The neuro-psych test asks things only you know how you feel about anyway.
The interview had questions relating to how I am currently. Since not much
changes on how you feel or react anyway.
But, I am fortunate to have one of those minds that remember everything clearly back to infancy
anyway.
So anything about my childhood I could tell her myself.
 
From what I understand, it should be expected that to verify a diagnosis of Autism the diagnostician should get input from those who knew the person being diagnosed since their early childhood. While it is true that sometimes people’s memory of the person being diagnosed is faulty, the memory of the person being diagnosed is faulty just as well, possibly even more so. It is probably not wise to only rely on the perspective of one person’s memories of the person’s childhood to give a diagnosis without verifying it with others. Do bear in mind that the diagnostician is unlikely to ask your family directly if they think you have autism, as it would not be expected that they would know the diagnostic criteria of Autism; the diagnostician would ask them if the specific behaviors which could lead to a diagnosis truly occurred. If you truly engage in behaviors that warrant you being diagnosed with ASD and your memories of the events are clear, then your family should be able to uphold it. Your concerns should really only come up if the diagnostician is bad at their job, but if that is the case then you should have much bigger concerns.
 
From what I understand, it should be expected that to verify a diagnosis of Autism the diagnostician should get input from those who knew the person being diagnosed since their early childhood. While it is true that sometimes people’s memory of the person being diagnosed is faulty, the memory of the person being diagnosed is faulty just as well, possibly even more so. It is probably not wise to only rely on the perspective of one person’s memories of the person’s childhood to give a diagnosis without verifying it with others. Do bear in mind that the diagnostician is unlikely to ask your family directly if they think you have autism, as it would not be expected that they would know the diagnostic criteria of Autism; the diagnostician would ask them if the specific behaviors which could lead to a diagnosis truly occurred. If you truly engage in behaviors that warrant you being diagnosed with ASD and your memories of the events are clear, then your family should be able to uphold it. Your concerns should really only come up if the diagnostician is bad at their job, but if that is the case then you should have much bigger concerns.

What if the people from the early childhood era are dead. What then?

Childhood behaviours/memories of are not the only part of the diagnostic process.
 
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What if the people from the early childhood era were dead. What then?

Childhood behaviours/memories of are not the only part of the diagnostic process.

While it is true that childhood behavior are not the only part of the diagnostic process, they are a necessary part of it. At least if we are using the DSM-5 criteria, as explained below:

“Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).”- DSM-5

“The DSM-5 indicates that symptoms must be present in the "early developmental period," which, as defined in the DSM-5 text, is roughly prior to 24 months of age.“ - Heisel and Associates

If there is no evidence that symptoms existed before that period of 24 months, then a diagnostician cannot give a diagnosis that aligns with the DSM-5.

Now, if all of the people of the early childhood era where all unavailable of course the diagnostician would need to rely only on the viewpoint of the person being diagnosed, because there would be no other viewpoint available. But such is not the case with this person, so if a diagnostician can get extra viewpoints it only makes sense that they would request it. This is hardly unexpected or out of place is my ultimate conclusion.

Edit: Wait, @Strong Sad, are you from America? If not, then my entire argument is as good as the paper it’s written on.
 

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