Autism Assessment

[Raggamuffin]

Last weekend I visited my parents and then my brother (James) and his wife (Lian) and their family. When I spoke with his wife, she asked how I've been doing since the break up. We spoke about my depression - she also suffers from it too. I also spoke of my autism assessment. She seemed relieved when I began this topic as it turns out my brother is also on a waiting list for an assessment.

My brother only joined the conversation briefly - he was pacing up and down the front garden and kept checking on their kids who were playing in the living room. He agreed with me that our upbringing with our parents was quite emotionally distant - we were left to our own devices and in our own worlds.

Certain things I spoke of to his wife seemed to really hit home with her. I couldn't tell if it was shock, or relief - or both. But she thanked me and seemed close to tears. She told me that she never knew James might be on the spectrum, until her dad and step-mum mentioned it to her. It seems that when she learned more about autism - it became apparent to both of them that James was probably on the spectrum too.

Lian tried to talk to my parents about it - and apparently it almost turned into an argument. My parents are of a generation which might have issues with Autism and other mental health issues. When a boy in my class was diagnosed with Asperger's, my mother said it was ridiculous, and that "Robert was just Robert." When I had spoke of wanting an Autism assessment with my parents last year, I mentioned my suspicions of James being on the spectrum as well, to which my mother echoed once again "James is just James."

Whilst my parents appreciate that me and my brother are different, I wonder if they feel like us having any sort of conditions might be a reflection of their parental ability. When I shared an entry from my art page regarding depression - my parents felt guilty, and said they didn't know how bad it was, and wished they could've done more.

Lian has a close relationship with my mum, and she said to me that she sees autistic traits in my mum as well. Lian also said that she's seeing autistic traits in one of her children as well.

The only part of the assessment which has me worried is if they asked me to bring a parent along to the assessment. I've only mentioned Autism a couple of times to my parents, and in subsequent conversations - the traits and behaviours I'd previously described began to be picked apart and normalised/trivialised by my parents.

Truth be told; I'm used to masking around my parents. I've tried my best to hide issues and problems from them, as whenever they find things out I start to feel awkward and ashamed. I know my parents are worriers, and they're also prone to catasrophic thinking. I felt it best to keep them in the dark about my issues.

When I left their house, I felt in good spirits. There was a feeling of relief in seeing my parents for the first time in over 6 months, and my brother for the first time in 2 years. Even though I'm quite distant to my family - seeing them helped with my feelings and worries of loneliness now that I'm no longer in my long term relationship.

Ed

 

[Alexej]

Sounds like you had a really good and fruitful conversation there.

There is a lot of stigma still around regarding mental illness and this is perhaps what you picked up.

When I had my assessment the assessor did not need to talk to my parents. However, I had my wife with me in the meetings. Perhaps Lian cold be in the meetings for your brother?

 

[zozie]

Also, it wasn't that long ago that autism was blamed on the "Refrigerator Mother" syndrome, which blamed a distant parent for a child's "abnormal" development. This was the accepted theory for a long time. It might be what your parents learned, and how they feel. In the 90s, my mother was blamed for "giving" her son, my oldest brother, schizophrenia.

I had my mom with me during my kids' assessment, but I didn't speak with her for months while I was doing my own research because I knew she'd be asking me so many "but are you sure?" questions. It's rare that we have not spoken to each other, but I felt it vital while I traversed the assessment process.

Bottom line: sometimes diagnosis results in an evolving sort of support system. I have support where I did not expect it, and have lost support where I thought I had it.

Solidarity -- this is a rough process, but I'm so glad you have at least a couple of people who support you, and of course you have this forum as well <3

I'm glad you were able to talk to your sister-in-law, and hope that your parents come round.

 

[Ronald Zeeman]

my best support is my siblings. know sister and brother who most likely also are affected,

 

[VictorR]

I'm glad to hear that Lian is understanding and supportive, and as others have noted, she might be permitted to sub in as a supporting reference for the assessment (I've noted previously that DSM 5 requires someone to validate early childhood, but outside of North America, ICD 10 is the standard and I believe it may not be as strict, but in any case, each diagnoser may choose, as they see fit, to assess using whatever tools and methodology they're comfortable with).

So does either one of your parents seem like they might be at least open to the idea of you being on the spectrum? In my experience, if one parent is suspected to be ND (in this case, your mother), it might be best to bring the other parent along if you are required to bring one as the validator, unless you have an older sibling who might serve in that role.

As I've noted in another post, one challenge when you have an ND parent who doesn't realize it is that they think everything is normal, and the other parent might be so used to their ND partner that they might have come to see ND traits as normal and trivialize them, but that a good doctor will be able to recognize and account for that.

ASD can be a challenging topic. I know myself I have relatives that I'd love to point out and offer help to, but even though I'm not close to them by any means, I don't want to risk them getting mad at me for suggesting that they are anything but normal.

 

[SDRSpark]

(I've noted previously that DSM 5 requires someone to validate early childhood, but outside of North America, ICD 10 is the standard and I believe it may not be as strict, but in any case, each diagnoser may choose, as they see fit, to assess using whatever tools and methodology they're comfortable with).

Does this mean that those of us who don't have anyone who was close to us in early childhood cannot be diagnosed under DSM 5? (Both of my parents are deceased...my grandmother might remember, but may not, as she wasn't there constantly).

 

[VictorR]

Does this mean that those of us who don't have anyone who was close to us in early childhood cannot be diagnosed under DSM 5? (Both of my parents are deceased...my grandmother might remember, but may not, as she wasn't there constantly).

The wording in point C in the DSM 5 crtieria for ASD is "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."

From what I've heard/read, it seems some are willing to take a client's own statement, but it seems to be discretionary.