Disclosing to family, assessment form

It also might open up the idea that they could be autistic too which might be hard to get their head around. What is seemingly normal behaviour within a family becomes pathologised. I don't want to scare you but I think it's good to consider different variables! 

If I wouldve shown that list to my parents above they wouldve run a mile. The diagnostic language of autism is heavily deficit based. Bear in mind you parents probably don't / may not see you as having such "profound", difficulties.

This is what I did too- I texted my mum to ask if we could fill in the gaps when she next called me (at our agreed weekly time, where she always calls me, which feels like an autism diagnosis all on its own ). She gave me the relevant info on my development and what I was like at home as a child and I completed the rest based on my memories of school.

Interestingly, the family informant questions were the only part of my assessment that weren't solidly indicative of autism. My more obvious autistic traits are ones that run in the family (the meltdowns being 'the family bad temper' for example) and so I do wonder just how useful it is to have family input when those family members have always thought "this is normal for us!"

No worries about the names, the Asperger's profile is pretty close to what got me started down this process to begin with! Thank you for all this it's been really helpful.

Some parents keep a 'Baby Book' where they record Baby's first this, and Baby's first that, etc.

Ben

I don't know if this is helpful but I actually didn't have my parent fill in the form themselves, because they are not computer literate and I felt that it would cause them a lot of stress to have to download and edit a document, so I filled in the bulk of the form and then just asked them questions (via text) that I didn't know eg. when I started to speak, walk, ride a bike, etc. 

Questions that asked things like how teachers treated me at school or what my play style was as a child - my parents wouldn't necessarily know anyway, so I was best placed to answer those parts. 

My late mother believed I had been 'made' autistic via a measles vaccination that I had as a small child... 

Not that she told me, mind you, gaslit all the way.. 

Ignore the names, as I said autism was founded with psychology, and this stuff is near a century old.. and you dont need all of the characteristics as there a fifty autistic traits now and you dont need to display all of them..

Well you just say that you’ve been referred for an Autism screening. Then tell them a few top tips, neurotypical tends to understand the Kanner/Asperger’s characteristics much more easily.

You dont want to baffle them with science, you just need to identify being neurological nature, thats protecting you from screening is not for the best, and that autistic children can be odd and unrewarding and thats is difficult for any parent.. 

Sadly my recollection is quite poor beyond a few snippets of memories, I definitely don't know any of the details being asked for like when I first started talking or walking, so I really would need their input. But it's good to know there's some allowance for family not providing that info.

Gillan Drew was the first book I read, a great introduction to life with ASD; I simply understood him.

Ben

Yes on the parenting front, just tell them that ‘refrigerators parenting’, as well as psychology, was ruled out as a root-cause of autism in the 50s..

I literally had to convince my parents to sill it out by saying "prove me wrong, then" because they were adamant that I wasn't autistic. Spoiler alert: I was. 

This is useful, particularly framing it as neurological and not psychological, thank you. My worry has been that they might feel judged about their parenting, particularly as I'm aware that they've always been extra worried about me and I've not understood why. The very idea that I'm struggling I think might be difficult enough - they know I've had problems but it's not something we've ever properly talked about. And the same is true vice versa, if my parents have had a problem it's mostly been kept quiet beyond a brief acknowledgement rather than a proper discussion. It's a lot to juggle and I can't find a starting point. Maybe I just need to jump in?

‘An Adult with an Autism Diagnosis’ by Gillian Drew. Is a nice introduction to this conversation.

I think that your parents will need some time to consider the span of your childhood, it’s important to let them know that it is not a reflection of their parenting, but rather an acknowledgement of the neurological root factors of any development issues. It’s important to introduce the concepts of: the triad of social impairments, repetitive and restrictive behaviours, and sensory anomalies..

They need to consider your childhood in relation to this.. they also need the consider that limited-capacities may not have been reached until a certain stage of development but anomalies were still present.

It’s also important not to lead them or ask them to do what they don’t feel comfortable with, they just need to know that they are not looking through a psychological-lens, but a neurological one.. impairments and manifested-behaviours.

If you have a good recallection of your childhood then there is no need for your parents to fill in the forms I believe.

Some parents will refuse, some may have died and some may be unavailable so the process has to accommodate these situations.

When returning the forms just point out that you were unable to get your parents to complete the forms - no need to go into the reasons why. If they do ask then say your parents react badly when the issue is raised so for the sake of your own mental health you chose not to engage in that conflict.