Tag Archives: growing up with undiagnosed autism

Telling my family about Asperger syndrome

My maternal family tends to adhere to a “blank slate” type of psychological paradigm (and so did I, earlier on), take it for granted actually: that any person is born with a blank mind, and develops according to what is filled into it.

 

 
Following that logic then social problems are always rooted in bad childhood experiences: people develops in a bad direction when bad things have been filled into them, and good when good things have been filled into them. It can be a very guilt-inducing paradigm when something goes wrong.

Aspergers and autism implies that social challenges can be mentally “pre-programmed”, and I didn’t think that would sit well in my family’s world view.

Also, the only experiences I know family members have had with someone they knew had aspergers were negative, so I was expecting some disbelief that asperger’s syndrome /autism could affect someone in the family, someone they’d known since baby and seen grown up without knowing there was anything major amiss.

Also: my whole maternal family is hyper verbal. They’re a kind of people who experience life in a highly word-processed manner and who don’t seem to notice social subtleties (unless things have fallen irreparably apart and it has become undeniable that something is amiss), because they are not really attuned to the non-verbal aspects of life.

For the above reasons I suspected that the whole Asperger/autism concept would be difficult for them to accept, especially within the family.

 
My brother

I told my oldest little brother first – that was in September last year. He is the sibling I grew up with, and just a couple of years younger than me. I decided to tell him first because I’d been wondering if he might be on the spectrum too; I thought he could even possibly have an ASD diagnosis and not have told the family about it.

However, while he is an “atypical” kind of person too, he’s always seemed more socially includable. While I fell through socially, he hung on and always seemed to have friends (mainly through his band activities I think). His life hasn’t followed a typical path (what’s that anyway?), but not a dysfunctional path either. He hasn’t had any severe mental or social problems that I know of, like break downs, panic attacks, depressions (well… how would I know), actual social isolation, and psychiatric hospital stays (like I have).

We rarely talk as such, and I barely remember his presence as a kid expect for our occasional shared creative mass production sessions, but we do have an intuitive understanding of each other, similar thinking styles, and tend to find the same general topics fascinating, albeit we don’t share the same specific interests.

We virtually never phone each other because *awkward silence*, so saying that I just wanted to chat was implausible… so I had to announce that I had something important to say, which put me under pressure while I frantically tried to find other things to talk about, too nervous to get to the point. Once I did eventually mention “aspergers”, he immediately switched on full attention – it sure meant something to him. I said my little script and went onto asking him if he has it too. He said that he’d been speculating about that some months ago and done some research, but wasn’t sure. He had done an online screening test and his result was fifty-fifty Aspie-NT, so that didn’t help clarify the matter.

I also mentioned that I suspect both of our parents may be on the spectrum too. Quite certainly our dad (classically aspergerish), and possibly our mother too, in an atypical way that may be sub-diagnosable but qualitatively autistic**. He didn’t comment, but seemed unsurprised about the suggestion.

Later after the talk, I received a reply from him to my follow-up email. He quoted some of my summary and used it to explain his own social strategies. I’m tempted to quote his description here, because it is great and it confirmed what I thought – that his mind works quite like mine, and he gets by using similar social strategies. However, since I can’t ask him for permission (he doesn’t know about this blog), that isn’t an option.

He attached his online screening test result from the “Rdoz Aspie-quiz“, which has some of the same overall tendencies like mine but is softer, milder, more in the middle.

 
Aspie (RDOZ) output graph (mine)
My quiz output
Aspie (RDOZ) output graph (my brother's)
…and my brother’s

 
The quiz output seeded new speculations (even though I know it isn’t something to take that seriously). My brother and I are quite alike at the core, so how come I’m more extreme? Isn’t it usually males that are more extreme? Are we essentially at the same level, but then I have “regressed” due to the way my life played out – because I for a long period of time couldn’t properly “pass“? Or did my life play out the way it did, because I’m more extreme?

My brother is the only person in the world who I feel is made of the same material as me; who is from the precise same alien planet.

 
My (aspie?) dad

The next person I told was my dad. I had began to schedule regular phone (Skype) talks with him in Todoist last year. Neither of us are talkative, so phone talks involve a lot of silence, but they’ve become surprisingly good, long and regular since I started my “Todoist social strategies”.

The conversations tend to evolve around factual information, such as bushfires, feral animals in Australia, and beehive sociology (inspired by his beekeeping hobby), along with some family updates. We don’t usually talk about personal touchy-feely kind of things, and my dad seems generally uncomfortable with topics like social problems, disability and mental illness… So I expected the conversation about Aspergers to be awkward.

The talk took place in early October last year. I let the usual type of conversation run for a while and had my husband come in too, and then said my scripted passage. My dad just said “Yes, OK.” He sounded a bit overwhelmed and sad, but not surprised.

I said that I would send a follow-up email with more information, but he said that I didn’t need to, that he already knew Aspergers (I sent the email anyway since I didn’t know how much and what he knows). He asked a few questions about who diagnosed me, and then we changed the topic and didn’t raise it again. I was happy and relieved after letting him know anyway, just as I was after talking with my brother.

He didn’t respond to my follow-up email, but sent another one with a new batch of old photos (he has been scanning & sending batches of old family photos over the last years).

I think his reaction means that he accepted it as an explanation, is sad about my history of social problems, and doesn’t have anything to add. He is probably uncomfortable discussing it, as he is not a type of person who is comfortable to talk about mental problems and dwell on the past.

I sneakily included a couple of links to aspergers online screening tests in my follow up email. I’m sure he has aspergers too, but I am also certain he would vigourously reject the suggestion due to its “mental disorder” status; he would want none of that.

I think knowing it could help him acknowledge how others’ needs tend to differ from his own but are still valid, and improve his relationship skills. Women (like my mother and his second wife and probably all women he has known in relationships) tend to want to try to change him and get more social life out of him. Knowing aspergers could potentially help him explain that he is as social as he can be, while also encourage him to acknowledge and care about how lonely social people can be with him.

Realistically I don’t think anything like that will happen, because essentially my dad seems to consider himself more Normal than everyone else. Pretty much the golden standard of Normality, which everyone else ought to benchmark themselves up against. It doesn’t matter if the whole world differs; then the whole world must be a bit off the mark and ideally ought to work harder to get up to standard.

 
My favourite cousin

My favourite cousin is in many ways the family member who knows me best and whom I trust most (in addition to my brother). She is a few years younger than me, and we grew up in the vicinity of each other and were often together during our early childhood. She has always had a wise, curious and calm personality that I like very much, and I admire many things about her. Especially her great diplomacy and social fine tuning, along with her intelligence, imagination, strong integrity, and calm and considerate way of being herself (that’s not an exhaustive list).

Like with my dad, we’ve been in regular contact since I began to schedule conversations with Todoist (also fuelled by her encouragement to keep in touch regularly).

Our Skype conversations tend to journey through interesting topics and often involve Internet research and follow-up email with links. Many of my recent Skype conversations with her are the most interesting discussions I’ve ever had. As with my dad, Aspergers was only one of the topics we talked about (other main topics being Mars One and Todoist). She reacted curious but cautious and didn’t really respond at first, she wanted to read my follow-up email first.

After reading the material I sent her, she replied back to me on email, saying that she had thought a lot about my diagnosis, and felt “it makes really good sense, which is both scary and also nice”. She then went on to point out things she liked and likes about me; my “tendency to be very present” and strong imagination, which she called “magnetic”. Her email left me feeling really, really good about myself, very appreciated and reassured about our good relationship.

All this happened in early December last year.

In later conversations, Aspergers and neurological differences more generally (e.g. ADHD) have become part of our repetoir of concepts that can be used to understand peculiar behaviours and difficulties in the family. I’m still awkward about “the A-word” (aspergers or autism) and don’t use it even in conversations where it is relevant, but I use the related concepts – extremely useful frameworks like executive function, sensory overload, and reading or not reading subtle social cues.

I started to feel that Aspergers isn’t just an explanation about myself. It is a benign conceptual “bomb” that spreads useful concepts in my family like ripples in the water, which can be used to understand the behaviours and challenges of other (especially younger) family members too.

 
My mother

My mother is the person I found it hardest to take it up with, and it is also most difficult to write about. Basically, I’ve avoided contact with her since my early adolescence (so 30+ years and counting), while she appears to desperately want to establish contact with me. I don’t remember ever feeling any emotional bond with her beyond her representing the safety of my home, and I’m very reactive towards her. That’s the short version, in reality it is of course more complicated. The bottom line is: I haven’t seen her many times as an adult and have never had a desire to do so, and she is now an age pensioner.

I hoped that telling my her about my diagnosis would help ease the fundamental miscommunication – be a small shock that could potentially make her let go of her preconceptions and begin to see me – and respect my boundaries… (and of course it would also be unfair to tell my dad and not her, since she would probably find out anyway).

However, I worried a lot about it too: not only that she might reject it, but also that she might over-embrace it and embarrass me, use it in ways I had not intended – that the diagnosis could become a new tool for invasion.

Her actual response was engaged, positive, serious, and meticulous. She clearly thought about it very carefully and read everything I had sent her before responding a few weeks later with a long, detailed email. This was back in November last year.

She wrote that “looking in the rear mirror, it explains a lot”, and that situations from my childhood, adolescence and adulthood had popped up in her mind many times since she read what I sent her. She then went on to briefly chronicle bits of my life (the parts of it she is familiar with, which is primarily the first part) in the light of Aspergers. She mostly focused on solitude and lack of sync in her descriptions, for example:

“It was always striking to me and others, the extent to which you were able to, from you were quite small, tinker with your own things, totally absorbed in your own little world, both at home and outside amongst others”. […]

And she talked about how when I was small, a Japanese film crew making a documentary about Danish childcare institutions (to compare with the Japanese counterparts) had filmed in my nursery and been “deeply fascinated with my concentrated tinkering by myself amidst the other children” and used it as an example of how Danish childcare institutions had “room for diversity”.

E.t.c.

She also focused on my big interest in animals, and suggested that it perhaps was “a compensation for friends”? (I replied that it wasn’t and isn’t a compensation for anything). It was very interesting to get a glimpse of her perspective on me when I was a kid; for some reason it had not really occurred to me before. She became more real as a person.

The correspondence went back and forth for some time with questions and explanations – it is clear that my mother didn’t know much about my life and difficulties later on (apart from the most obvious – depressions, school absence, mental hospital stay).

It was awkward and stressful to dig up old misery in order to explain my behaviour, correct misunderstandings and fill some of the gaps in time for my mother, where she doesn’t know at all what was going on with me. I had to draw a line at some stage and say that’s it, I have explained enough and I don’t want to continue this very personal, emotional conversation on a permanent basis – I just wanted to clarify this particular matter on a fundamental level.

However, it has definitely been worth it and a big a break-through for my mother in her relation with me, and that is valuable – for her, and also for me I think. I think she understands me better now, and hopefully won’t be as prone to projecting and overstepping my boundaries; that she is more willing to listen now when she can see that my behaviour does make sense, that there is a system in it and was all along, and that I’m not hostile when I can trust my boundaries are acknowledged and respected.

I have got a more nuanced understanding of her too. I can see that perhaps some of my assumptions are inaccurate, and that I’ve probably had too much of a black & white perception of her (also reflected in my descriptions above), formed when I was much more immature than I am now and not updated later on when my view on most other people developed and became more nuanced.

 
Aunties and such

After I had talked to my mother about my Asperger diagnosis, she would like to talk to her sisters about it, and I allowed that. I also allowed her to pass on my email attachments to them.

My maternal family is a very collective and verbal family culture. They see each other often, and process emotions primarily through talk.

After a while, my three aunts and my uncle all responded via email with comments, questions and their impression of me as a kid. They all reinforced my childhood personality profile as a creative, active and intelligent child with a lively imagination. They emphasised things they like about me; framed my personality in a positive light, while also saying that it would have been useful to have known about Asperger’s earlier. Overall, their responses were very positive and supportive.

My closest aunt (my favourite cousin‘s mother) wrote a very insightful letter that I really appreciate. She called the diagnosis an “eye opener” and said she enjoyed reading my personal description, that it “made things fall into place” and gave her a clear sense of what asperger’s is for a phenomenon. She reflected that it of course has many grey zones, and that my descriptions therefore help shed light on human relations and communication problems more generally, such as the fundamental importance of being able to read social codes and patterns and learn from them over time. She also really liked my “trick” to handle poor sense of orientation, and joked that she hoped I hadn’t copyrighted it, because it was useful for her too! Poor orientation is common within my family.

My closest uncle (her husband, and my favourite cousin’s dad) replied that he had read my essay and thanked me for sharing my “considerations about Asperger symptoms” with them. He then went on to praise my reading & writing skills and said that I always taught him something. His passion is literature and writing, and he has always been a great fan & supporter of my stories when I was a kid. He always encourages me to “write something – like a long story!”, and I think he always assumed I would grow up and become a writer – and haven’t given up the hope. I read his reply as an encouragement of me as a person, with a hint that he didn’t care for the label hidden in the fact that he didn’t comment directly on that.

My oldest aunt sent some links to articles and books about autism that she had seen. She and my mother both wrote to me recently that they together attended a presentation about ADHD and ASD. They both wrote about how interesting and informing the presentation was, and my mother in particular was thrilled and wrote (again) how, together with the articles and materials I sent her, “it all makes really good sense”. She also wrote that the venue was full, and “nearly everyone had a connection to someone with ADHD or ASD, often kids or siblings”.

My youngest aunt’s reply was the only one I found frustrating. She wrote she remembered me as a happy and extravert baby and later super creative child, who led in play with my brother and cousins, and later withdrawal and “a certain angry behaviour sometimes”, but that “We thought the reactions stemmed from other experiences”.

There is nothing wrong with the happy-baby stuff except there was nothing in her email that acknowledged the difficulties I’ve had (which everybody know about), or which related to any of the information I had given. It felt like an “I don’t think so” statement in disguise.

She said later she had skimmed some of the email attachments, and I imagined she’d looked quickly through my attachments to confirm her first impulse – to reject whatever stereotype of Asperger’s she had in her mind – saw a few words that seemed to confirm the stereotypes, and thought it unnecessary to read any further before making a judgement. Then her mind served her the most happy, social, idyllic baby memories of me it had in store, and used them as evidence that I can’t possibly fit the stereotypes. Except I wasn’t trying to match stereotypes in the first place, and that’s what the attachments were for – to give a more nuanced background understanding.

 
The mind as a scrap book

She suggested a metaphor: namely that we’re all born with an empty scrap book, that needs be filled up with stickers before we are 3 years old. That’s all she said, but it seemed to imply that social problems occur solely because the social “scrap book” hasn’t been stocked up properly before the 3yo deadline.

That’s basically the “blank slate paradigm” which is my family’s central psychological paradigm, and the line of thinking that were always employed to make assumptions about my motives, behaviour, and social insufficiencies (when they were noticed at all): there *had* to be some sort of sinister psychological trauma underlying it all; psychological damage which had made me broken. If only I could overcome the wounds, heal, forgive; move on. Why didn’t I. A frustratingly complicated case.

That line of thinking has never done me or my family any good.

I adapted my aunt’s metaphor to explain my situation the following way: I told her that the problem with my “scrap book” is that is quickly gets overfilled with irrelevant stickers. It takes a long time to integrate each sticker and determine whether it is worth keeping, and because the inflow is too fast, my book quickly get congested and the stickers forms messy layers on top of each other, so I don’t know what I have, and therefore can’t make much use of my stickers.

Because of this situation I said, I’m often occupied with trying to sort out the mess in my scrap book, while others are busy exchanging stickers. I need a lot of alone time to organise my stickers in order to be ready to integrate new ones.

I think the reversed metaphor improved the understanding a bit.

I also tried very hard to describe how I experienced the world growing up, and how my tendency to withdrawal and “anger” didn’t suddenly pop up out of the blue. My explanations became very long and stressing to write, and left me feeling overexposed, so I’m not sure it was a good idea to go that much in detail. On the other hand, I just wouldn’t stop half way through explaining, and it escalated because it was very important to me to achieve at least basic understanding.

Her last reply expressed understanding, but I’m not sure if that was just to accommodate me and stop the unravelling of difficult explanations.

It still nags me a bit that she doesn’t get me, but my aunt experiences the world very differently from me. How should she be able to understand, or even see, the situation of someone like me?

She is social and extravert with good conversation skills, a large and lively social network, and a strong tolerance for sharing her space with other people. She is hyper-verbal (like all my aunts and mother) and navigates the world primarily by anecdotes, hearsay and gut feelings; she seems to experience life in a highly verbally filtered way.

She is passionately into alternative therapies and new age spiritualism, and reacts to the idea of systematic observation and factual rigour as if it is irrelevant detours from the predetermined touchy-feely spiritual reality, which people like her can feel in the form of “energies”.

The way I see this type of attitude is that it lacks a way to separate inner feelings/sensory impressions, from the external world. As a result of that, people who are into it (including my aunt) tend to impose their internal world on the external world and not be able to differ between others’ reality and their own inner images and moods. They don’t even bother observe, because they feel so certain that they already know what’s there. Details that don’t fit the assumptions simply don’t register because they don’t seem to make any sense; they’re just everyday “noise”; like “snow on the screen”.

 
Wrapping it up

So: mission accomplished – I told them.

I think the process of talking about it has given better understanding on all sides so far (including my understanding of my family), and some sort of sense of closure for my youth history.

The process of understanding and reframing is of course ongoing, and there are also still close family members I haven’t told, such as my two youngest brothers. I don’t see any reason to tell people just to tell them, but the family members mentioned above are almost all closely connected so it seemed like the best strategy to approach the disclosure process in a systematic and well planned way in relation to them, since it was very important to me that they understood it, and they’d talk together about it anyway.

All in all I’m happy about how the process worked out; my disclosure was mostly received with openness, curiosity and desire to understand. For some, especially my mother, it was probably a relief, and very interesting, to get a name on “what went wrong”. For others the “news” seemed merely to have some entertainment value; something new and interesting to learn about. Time will tell if the disclosure will have some unexpected positive and/or negative long term side effects.

 
Likely to continue sooner or later.
 

 

 
Updated: I’ve un-serialised the posts I’d written about this topic, merged them together and shortened some of it, so this post is now longer than it was.

Aspergers’ Syndrome Summary

This is a brief outline of Asperger’s Syndrome* which I emailed to family members to provide quick background information when I told them that I have Asperger’s Syndrome.

The summary is designed to be an island of background understanding to stand in the vast sea of often conflicting information that can be found on the Internet; oversimplified stereotypes, outmoded research, scare mongering, popular hype.

The summary is translated from Danish and mildly edited for this use. Some of the links are to Danish articles.
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Songs of the Gorilla Nation: a Book Review

Songs of the Gorilla NationSongs of the Gorilla Nation by Dawn Prince-Hughes
My rating: 5 of 5 stars ★★★★★

I found it almost impossible to review this book straight away, because there aspects of it I strongly dislike and aspects that I find very valuable.

I think it is an important book: It gives a great glimpse into one person’s reality of coming of age with undefined high functioning autism. Most importantly, it describes a strategy for overcoming autistic isolation. Not a cure but a way to kick start the positive feedback loop of social relationships that social learning requires in order to happen.

Dawn is a gifted writer, and the book has brilliant passages and good integrity. Its structure is meaningful, organised into 3 sections:

Part 1. Dawn’s childhood and youth history growing up with undiagnosed autism, knowing something is wrong with her socially, but unable to figure out what it is. She is severely bullied and drops out of school, becomes homeless and hungry, and later finds a way to make a living as an erotic dancer. The roots of her passion for primates is her childhood fascination with ancient humans; and that fascination runs through her life story as a sub-surface theme waiting to unfold.

Part 2: Dawn discovers the gorillas. She is lucky and gets a job in the zoo, and gets more and more involved with the gorilla family. They become her family, and she learns social skills by observing and interacting with them

Part 3: Dawn’s life post-zoo, with the social skills she learned from the gorillas. She establishes a family, works through relationship problems, discovers the name of her condition and gets a diagnosis, gets on meds, and makes her special interest into her study direction and career.
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