My methodology for telling my family about Asperger’s

In my last post “My Aspergers Journey, I said that this next post would be about how I went about telling my closest family members that I have Aspergers*.

Then I didn’t post for over 3 months half a year more… Sorry. There are several reasons for that. One is illness in the family (I’ll write about that later), and another is that I got stuck because telling my family about Aspergers – although it seem to be simple, just a label, right… the circumstances that have lead to this point are tangled into virtually everything in my life.

On the good side, the delay means that I got more reactions over time, and that I am now seeing the more long terms effect of the disclosure. This post is about how I went about it and how my family reacted, so it points some months backward in time – to last year and the beginning of this year.

 
How I went about talking about Aspergers

“My close family” means my parents, my oldest little brother, and my maternal aunts and uncles: these are the family members that I had most to do with when I grew up.

They all live on the other side of the planet, and I have not seen any of them for about 5 years. I didn’t use to see them often before I moved to Australia either – the contact with especially my maternal family has been somewhat sporadic during my adulthood, especially relative to how often they see each other (they are a very close-knit family). So I don’t usually see my family as such, and phone calls are rare too.

None of my close family members live together. My parents divorced over 30 years ago, and my mother lives alone, while my dad lives on his farm (at that time with his second wife and my youngest brother; now just with my youngest brother). My oldest little brother lives with his girfriend through many years and their cats. Those persons, and my favourite cousin, are the close family that I wanted to tell.

The distance meant that face to face conversations was not an option, so I decided to raise it in 1:1 phone/Skype conversations and then follow up with a written explanation. I wanted to probe the immediate reactions and clarify misunderstandings straight away, but also explain the core issues in a well organised, neat way to counter the oversimplified and often contradicting stereotypes they’d sure meet on the Internet. The written follow-up also gave them time to digest the information in their own pace. I was very nervous about mentioning Aspergers, so I delayed the disclosure process for a while and carefully prepared how to talk about it.

 
Script

I made a simple phone script to introduce the topic, loosely along these lines:

“There is something I would like to talk about/tell you. It is not really news as such, but more a sort of explanation for all the difficulties I’ve had during the course of my life, especially socially and with school, employment and so on, some of which I still have. A while ago I was diagnosed with asperger’s syndrome [adding that it isn’t really called that anymore*]. It is not really a tragedy, it is more of an explanation for the many problems I have had with fitting in socially during my life, as well as many of my personality traits, strengths and weaknesses. That’t what I wanted to say… I have collected some links to easy articles about aspergers, and written a summary of what I’ve learned about it, and will email it to you. Please don’t hesitate to ask if you have any questions after reading it.”

I also thought of a few casual-chat topics to talk about first to enable me to wait for a good timing to raise the topic; I postponed the talk to late in the conversations in all cases because it would be too awkward to raise it straight away, given how rare phone conversations with family were in the first place.

 
Email attachments

The follow-up email had the following attachments**:

1. A brief summary of what Asperger’s/autism is with a list of links to brief, easy articles in Danish, mostly about how Aspergers tend to present in girls… so it was biased towards the aspects that are most relevant for my case. The summary was edited/expanded a bit over time.

2. “Important types of coherence“, an essay I wrote a while ago to explain a core problem with how my mind works to my therapist (it is a much milder problem now than earlier in my life, but still a core factor). I didn’t initially intend to attach it because I thought it was too personal, but decided to do so in the last minute in every case.

When I wrote it I initially thought it could be an extreme form of disassociation I was describing, but my therapist called it for the best description of weak central coherence that he had read, and a very neat overview. Regardless of whether it describes a general phenomenon or just my mind, it gives a really good insight into how my mind operates, which is what I want my family to understand.

3. A copy of the DSM-5 criteria for Autism Spectrum Disorder, which are the diagnostic criteria used here in Australia (I think I only sent that one to my mother)

Later, I’ve also emailed a link to “The boy whose brain could unlock autism“, an article about the Intense World Theory, to some family members who emailed me with more comments and questions, including my mother. The article / the intense world theory seems to resonate well with how my family sees me.

 

 

* The official name of the diagnosis is now Autism Spectrum Disorder Level 1, but I stick to the label Aspergers because it is still what best expresses my situation and challenges going through life with a relatively “invisible” disability. I reasoned that the broader label Autism would bring more confusion than understanding in the context of explaining the diagnosis to my family, because it is such a wide umbrella diagnosis covering a wide array of autism (& co-morbids) “fruit salads” (of which many present much more severely than I ever have).

**I have posted the attachments as separate posts to be able to link to them individually later. The coherence failures described in my essay is the essence of many of my most pervasive problems, so that will be useful

 
This story in its full length, despite the date of 12 May 2014, was posted on 8 July 2014. It has been a long time in progress; the majority of it is written about February this year, and most of what it is about took place last year.

In the meanwhile, my father died.

I’ve decided to publish it anyway, but backdate it to some time in mid May, before he died.

As of 15 September 2014 (in connection with moving the blog to this new domain and adjusting its inner link structure), I’m revising the family disclosure story and breaking it into smaller parts, as well as cutting out some of the content. I am also removing the password protection, since I have set the blog to discourage indexing by search engines anyway.

 

Clipart - manual with tool

 

Illustration from openclipart.com
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