Tuesday, September 5, 2017

Encountering the Limits of My Professional Autism "Expertise"

Anonymous

Photo © Carissa Rogers | Flickr/Creative Commons
[image: Adult and two children, silhouetted against
a lake and colorful pink sunset.]
I started working with autistic children in the mid-nineties, as a volunteer in a magnet school. The experience was influential, and I went on to become a psychologist, getting a PhD focused on autism research. Since then I’ve been working in academia for almost a decade, and have published numerous papers reporting on novel autism studies. I’ve built a reputation in my sub-field within autism research and am, I’d like to think, fairly well-regarded professionally. All of this was established well before I had children.

Earlier this year, following about a 12-month process plus a longer period of discussion between myself and my partner, my daughter Penny was diagnosed with autism.

In many ways nothing has changed—Penny is still Penny, my work is my work. In other ways, of course, things are different. The "official" designation of autism for Penny means I am now a "stakeholder" in my own research field, as are the rest of the family. And I have had to experience systems I thought I knew well—such as the diagnostic pathway—from the flipside.

I am by no means the first academic to have a family connection to autism, but I suspect it is more common for a researcher to move into autism studies following the diagnosis of a family member. In fact, I can think of many examples where this is the case, and know of few others like mine – where the professional interest predates the personal connection.

I pride myself on being engaged with the autistic and autism communities. Nevertheless, the official arrival of autism in my family has left me with no doubt as to the limits of my supposed expertise, as in some situations my training and information has been of no use whatsoever. I hope the professional/personal gap examples below may empower parents to know that the ‘professionals’ don’t have all the answers, and also inspire professionals to do what they can to address such challenges.

How to talk about autism with my other child 

My autistic daughter has a six-year-old little brother, Hank. They have a tumultuous relationship, to say the least. When Penny is exhausted from a school day, having worked her butt off to meet everyone’s expectations of her, it is important that she does not have to meet similar expectations in our house. This is her home, and she must be able to relax here.

But what about when her preferred form of relaxation impinges on Hank? What about when Penny wants to commandeer their shared bedroom as her quiet space? What about when her repeated humming of the same phrase drives him round the bend? What about when he is given a new fleece sweater and she seizes it because it is So. Perfectly. Soft?

It is a constant struggle, even as an adult, this working out how to tread the line between supporting Penny’s needs, and also asking her to be reasonable and fair as a family member. Helping a six year old work out how to achieve this balance too?—virtually impossible.

How to ensure my daughter feels loved

My daughter is not a fan of kisses and cuddles. If she is watching a favorite TV show or playing a game, she doesn’t especially want my company—and many times she has asked me to leave her alone. Yet my son loves physical affection. I am not sure what Penny makes of it when she sees me smothering him with kisses, or giving him “just one more hug” before bed.

It troubles me greatly that I am not sure how to express my love for her. Though she and I share few interests, I do know how to make her happy—my husband and I shower her with new facts about the things which interest her, we appreciatively watch her home-made puppet shows and applaud them with unfeigned enthusiasm, we take her to the trampoline center whenever we can. But while these are all obviously the actions of a loving parent, I don’t know whether they make her aware of our love, in the same way that the traditional markers of affection so obviously do for Hank. Although it is her choice, does she feel left out of a key part of family life?

How to talk about friendship

One of the major factors that prompted us to seek a diagnosis for Penny, apart from her telling me explicitly that she knew she was different from other kids, was her difficulty making friends. Or rather keeping friends—she makes a new friend incredibly easily. She is open and gregarious, and will readily introduce herself to children her age at the beach, or on the playground. But her friendships with children she sees regularly—at school for example—are very up and down. Penny is extremely pre-occupied with trying to manage these friendships, often trying to create a gang or club in what I interpret as an effort to codify and organize her friendships into something more reliable and predictable. Needless to say, this doesn’t usually work!

My partner and I do not want to "teach" Penny how to make friends—I’m not sure this is a talent which can be taught, and I won’t consider putting Penny in any program, however well meant, that is more likely to undermine her self-esteem than develop useful skills. This leaves us with three options as far as I can see, all somewhat unappealing:

One is to tell her that this melodrama is a normal part of friendship. Accurate perhaps—I can’t really tell whether there’s anything different in her experience of friendship than that of any other girl her age; maybe she just takes it harder, or dwells on it more?—but of limited practical use.

Another option is to help her understand that her struggles with friendship are not her fault—again true, but I don’t relish suggesting that her classmates are incapable of "getting" her. I hope it isn’t true, but even if it is, I don’t see how this would make things more positive.

The third option is to simply reassure her that it is OK to only have a few friends. I feel pretty strongly about this one—if there’s anything new I’ve noticed since Penny got her diagnosis, it is that society does not endorse the option of growing up and just not having a lot of friends. Every adult asks a child, by default, about their friends. In every story, a happy ending involves a gang of friends, or a marriage. Popularity is an entirely unquestioned marker of happiness. Where are the role models for those who are happy being alone? For this reason, we’ve agreed that my partner, who has very few close friends and is perfectly happy that way, should try to talk more about this, so that Penny can see that building a big gang of friends is not a prerequisite for living a good life.

How to manage my personal connection with autism in the workplace

This blog is being written anonymously for good reason: While I value and respect the many insightful accounts shared by parents, I’ve decided that I shouldn’t share my daughter’s information online before she can make that informed choice herself. In particular, because I am often speaking about autism at public and academic events, it is important to me that Penny doesn’t become a default part of that.

On the other hand, I work with a lot of people who are also my friends, and I want them to know about what’s going on in my family. Even beyond my immediate group of colleagues-who-are-also-buddies, there are people who maybe ought to know. I’ve had to sit awkwardly in dozens of meetings since my husband and I both decided that Penny was probably autistic, and bite my tongue as people speak as if the only connection any of us has to autism is a professional interest. In one particularly tough meeting, I had to endure someone describing autism as “an unfortunately incurable disease.” I’ve no doubt he would never have dared use such language if he had known I had an autistic daughter, but challenging him would mean outing her, which I didn’t want to do.

I’ve always argued that there should be no difference in the language we use to talk about autism in the absence of autistic people versus in their presence (or in my case, in the presence of a family member). Sadly, I have become profoundly aware that this is not the case.

"Expertise" does count for something…

There have been many times over the past year or two when I have been grateful for my professional knowledge. I understand the diagnostic process, and while it was painful to have to repeatedly emphasize my daughter’s difficulties, I knew what to expect at each stage and I’m sure experienced far less stress than many parents.

I have read with interest the growing literature on the profile of autism in girls, which gave me the confidence to seek a diagnosis and allowed me to find good resources (like this excellent booklet) to share with the school and wider family. I can make informed choices, with Penny, about what supports might or might not be helpful for her.

The “everyone’s a little bit autistic” and “but she can’t be autistic, she is doing so well!” reactions from some family members were upsetting,  but being prepared for them softened the blow. Most importantly, perhaps, our familiarity with autism meant that neither my partner nor I felt any distress during the process or at the point of diagnosis.

We hope that her autism label will allow Penny to embrace and own her identity, but also that she won’t let others use it to limit her, or her opportunities. The great strides being made by the autistic community make me optimistic that her future, and that of her community, is full of hope and opportunity. I’m excited to see what she will achieve in her life, and I hope that, expert or not, I will find the right way to support her.