Tuesday, September 19, 2017

Autism Information That Will Help You

TPGA editorial and support crew
[image: Selfie of red-headed white woman
and her handsome autistic teen son.]
Welcome! Our team created Thinking Person's Guide to Autism (TPGA) to be the autism guide that didn't exist when our autistic kids were first diagnosed. You can rely on this website, our vibrant Facebook community, our Twitter feed, and our book for evidence-based, compassionate, and useful information and discussions from autistic people themselves, parents, and professionals.

Here are some of the TPGA basics, if you're new here. But please explore the hundreds of posts on our site, and our extensive Resources section, if what you're looking for isn't directly below.

-Shannon Des Roches Rosa
TPGA Senior Editor




New Autism Diagnoses

Understanding Autism

Evaluating Autism Information

Monday, September 18, 2017

Don't Let Congress Dismantle the ADA: How You Can Take Action

Maxfield Sparrow
unstrangemind.com

Trumpcare Protest At The U.S. Capitol 2
Photo © Stephen Melkisethian | Flickr/Creative Commons
[image: Black-and-white photo of disability rights protesters
at the U.S. Capitol: some using wheelchairs, some not.]
We educated our legislators. We wrote letters and made phone calls. We worked hard to get the message across, yet the House judiciary committee has chosen to take the next step to dismantle the Americans With Disabilities Act (ADA): H.R. 620 will go in front of the entire House of Representatives for a vote. We have no idea yet when that vote will be, so we need to renew our efforts to educate and persuade our lawmakers, so they will act to protect the ADA, and reject H.R. 620 and its agenda to confuse and limit the ADA.

As I wrote back in May, “Unless we educate our legislators about the harm of notification bills like H.R. 620 and similar state-level legislation, the ADA Title III regulations that protect us from discrimination and access barriers will are bound to become encumbered with unjust obstacles.”

H.R. 620, the ADA Education and Reform Act of 2017, will weaken the ADA and have a strong negative impact on the lives of disabled people and our access to services, businesses, and full integration in the communities in which we live. The Autistic Self Advocacy Network has helpfully provided a script for disabled people to use when contacting Congresspeople about H.R. 620:
“My name is [Name], and I live in [your town]. I’m [calling/writing] to ask Representative [Name] to vote NO on H.R. 620. People with disabilities need to be able to shop for groceries, stay at hotels, and use other public accommodations. It has been 27 years since the Americans with Disabilities Act. Disabled people in our district have waited too long for access—and businesses have had plenty of time to provide it. Please protect the ADA and vote NO on H.R. 620.”
Whether you use the script or tell Representatives in your own words, it is crucial that we all make our voices heard now, as quickly and as emphatically as possible. Disabled rights are human rights, and that means that everyone’s rights are in danger right now. We cannot let this attempt to roll back human rights legislation go unchecked. It’s time to pick up your phone, your TTY, your keyboard, or whatever communication device will allow you to make your opinion known to your Representatives.

If you don’t know whose jurisdiction you live in, check Contacting Congress, a web directory of Senators and Representatives in the U.S. federal government. If you can’t get your voice heard through the usual channels, ask your friends, family, support staff, or disability rights organization to help you get the message through. So many of us depend on a solid ADA to protect our education, our participation in the community, and our beautiful and valuable lives.

The time to act is now! We must protect the ADA and the rights of disabled people in the United States. Tell your Representatives that a vote against H.R. 620 is a vote for the lives of scores of millions of disabled Americans.

Sunday, September 17, 2017

What Makes Institutions Bad

Mel Baggs
ballastexistenz.wordpress.com

Buffalo State Hospital
Buffalo State Hospital, closed in 1974. Photo © Shannon O'Toole
[image: A dilapidated interior hallway of a former state hospital.]

Most people don’t have the foggiest clue what’s bad about institutions. What’s bad is something you pretty much never hear about, which is the violence it does to people’s insides at a very deep level. And that can’t be stopped by just removing the things that LOOK bad and throwing a layer of glamour on top.

Please, please, please everyone who talks about this in the past tense—STOP. This is still going on. Everywhere.

I think too many people get the wrong kind of idea. They will think that this is over. It’s not.

They will think that the awfulness and cruelty of an institution is measured by the size, the shape, the physical beauty or lack thereof, the amount of money funneled into it.

And those things are not real.

And those things—the belief in those things—are hurting and killing people still.

People don’t understand what’s behind the worst institutions I can possibly imagine. They think I’m kidding when I say it. Understand that I’m saying this as someone with experience of institutions that people often remark (from my photographs) look just like prisons, and institutions that look absolutely lovely to anyone who doesn’t have to live in them.

The worst institutions have lots and lots and lots of staff. They have beautiful grounds that people are more or less free to walk around on. Every room is decorated in ways that suggest a regular, pleasant house—and if anything is stained or broken someone fixes it, washes it, and paints over it within a day. There are no locks on the doors.

All of the staff are gentle and would never physically abuse an inmate. They are highly trained at redirecting and calming anyone who becomes violent. If you go outside, they follow you at a discreet distance, where they think you can’t see, to give the illusion of freedom and privacy. Their every movement and tone suggests sweetness and gentleness.

But they treat everyone as if they were somewhere varying, between infancy and four years old. With everything—everything—that entails.

Because they do not use physical restraint, they have to restrain you in other ways. They do it by such skillful manipulation that if you ever find out you were being manipulated, it’s long after the fact. If you confront them on it they’ll sweetly and politely tell you they have no idea what you mean. And they will continue to somehow always get you to do what they want, or else to feel awful about not doing so.

Glamour is a word that can refer to a kind of faery magic that can make a hovel appear to humans as a splendid palace. I often use the word to mean a similar kind of deception—a beautiful facade over a terrible reality. I make it part of my life’s work to see through glamour. And I see a whole lot of glamour used in conversations about institutions.

The above institution I have just described has a layer of glamour over it as well. If you look beneath the surface, it’s utterly horrifying. Most people don’t know how to see beneath the surface. Even when you personally are in such a situation, it can be hard to see.

You feel as if there is something pressing down on you, muffling and suffocating. But when you look around, there’s no outward sign of it. So why are you not happy? You must be an awful person to feel so awful when all these nice staff people are doing so much to make you feel at home. You look around, you try to search for what is bothering you, and it’s nowhere. But you’re in agony. Whenever you think nobody’s looking, you cry, sometimes it feels like you’ll never stop. Deep down inside you, you know something is going terribly wrong. But trying to pinpoint it is like trying to get a firm grip on a cloud.

Get a glimpse under the glamour and you see that all that has happened is a bunch of substitutions. They stopped locking the doors, but they started following you everywhere and subtly guiding you where they want you. The institution itself is positioned so that even if you tried to run away you couldn’t get anywhere. They stopped restraining your body, but their manipulation is like a permanent set of shackles on your mind. Their sweetness in manner hides the fact that they are sweet to you the way they would be sweet to an infant—even when you’re pushing sixty. Treat you like that long enough and you begin to respond and structure yourself like an infant, and the damage that does inside can’t be calculated.

I literally have nightmares about that type of institution. When I’m wrapped up in the glamour, this terrible calm takes over. It feels like something soft and smooth pressing all over my skin, and the temptation is to surrender to it and feel its fake calm, fake happiness. Then I wake up and want to vomit I am so terrified and disgusted with what I’ve just experienced.

This past summer I attended a recreation program for DD (developmentally disabled) people. And it was so much like a replica of my nightmare it was scary. Sometimes I would get smothered under the glamour, other times I wanted to scream. I cried more that week than I normally do in years, yet I was at every turn made to feel as if the problem was me. I can be so very passive but even my most passive wasn’t good enough for them.

One day I looked around and saw that everyone there was older. From the era of big institutions. Where they were used to being treated like this, and mostly could out-passive me any day (which is scary because I can get very passive). I talked to a woman whose roommate goes there—she said she goes in a grown woman and comes out acting like a young child. And not in a way that’s just her self-expression—this is one of those places that molds you into that form.

To survive in a place like that something inside you has to break. It’s impossible to fully explain to someone who hasn’t been in that position. Something inside you has to die. And it doesn’t die any less because you got one of the “good” (read: glamour-covered) institutions. The same forces are crushing down on you either way, the difference is cosmetic.

The worst part of institutions is not physical violence, obvious forms of abuse or neglect. It’s not even the experiences you don’t get to have. It’s the damage that is done right down to your soul, by living under the power of other human beings. Glamour makes no difference. Prettiness makes no difference. Size makes no difference. Even length of time makes less difference past a certain point than you’d think.

Until you understand that damage—what it is, what it means, where it comes from—you will never get rid of institutions. You have to understand it on a very intimate level or you will reproduce it without knowing what you’re doing.

I still can’t tell you how long I was institutionalized. I can tell you roughly the amount of time I lived in mental institutions and other residential facilities. But that’s not the same as the amount of time I was in institutions. I call what I got when I got out, “community institutionalization.” That’s where you live with your parents but you spend most of the day being driven between various places—segregated schools, segregated day programs, segregated rec programs, each one with institutional power structures behind it. I remember mental institutions where they walked us to different parts of the grounds for different parts of the day. There’s not so much difference between that and being driven.

The transition between a locked ward on a mental institution and later periods of my life was so absolutely gradual that by the time I was “free.” I never noticed. That’s how they wanted it. I simply created the institutional walls around me wherever I went. That’s why I put “free” in quotes. If I had been someone else, I would have been free. Because I was me—because of my particular history—I was not. There were invisible walls all around me and I certainly never noticed the real ones were not there. Which was exactly the purpose behind what was done to me. They didn’t think I could function outside an institution so they carefully built one inside my head, making me truly unable to function anywhere.

I can get over the physical violence. The attempts on my life. The neglect. The sexual abuse. The parts of “normal life” that I missed and still am missing. So long as I physically survive (which even the recent rec program almost avoided) I will and can get over these things.

I am not sure to what extent I will ever get back the parts of me that died in order for the rest of me to survive. Every now and then I notice I’ve gotten a little bit back, and I think that finally everything will be okay. And then a little time passes and I realize how much is still gone.

I’m not even saying I can’t be reasonably happy. But there are parts of me I still have no idea if I will ever get back. Those parts weren’t destroyed by ugly bare rooms, horrific physical or sexual abuse, the loss of normal experiences, or any of the rest of the things most people think when they think of bad institutions. Those things happened to me and they are bad. But on a real basic level they are not the cause of the problem.

The cause of the problem is a certain exercise of power. Of person over unperson. And in order to survive it the inmates have to become as much of that unperson as they can manage. And that does violent damage deep inside the self, that can be incredibly hard to repair. It’s violent even when it comes with purported love and sweetness and light.

And until people can stop forcing us to damage ourselves in this way, institutions will continue. That, not anything else, is the core of what is wrong with them. But it’s much harder to put that into songs or images or even just words, that the average person would comprehend.

----

(I wrote this in response to a Dave Hingsburger post. Andrea Shettle asked me to post it.)

Monday, September 11, 2017

Autistic, Gifted, And Black: An Interview With Mike Buckholtz

Music producer, actor, and writer Michael "Hot Mike" Buckholtz is also an advocate for autistic people, especially those who, like himself, are part of the Black/POC communities. We recently chatted with Mike via email about his background, some specific challenges (and deadly prejudices) Black autistic people face, and ways he thinks younger autistic people of color can empower themselves. You can follow Mike on Twitter at @OfficialHotMike.

Mike Buckholtz
[image: Black-and-white photo of Mike Buckholtz: a Black man
wearing a silver suit, glasses with blue lenses, and pulled-back locs.]
TPGA: Can you tell us a bit about your fabulous career in music and entertainment, and whether being autistic has been a factor?

Mike Buckholtz: I started out as a Hip Hop music producer for MC Hammer beginning in 1989. Hammer and I met in 1984 in the U.S. NAVY as barracks roommates. MC made a fantastic statement about that time. (I'll let him tell it.) As of  November 2016, MC Hammer has sold 50 million records, some of which I've had the honor to work on.

After MC Hammer, I worked for other labels, signed a songwriter's deal with Warner/Chappell (whom I'm still with) started my own management corporation and authored a self-published book about autism. I'm, also, currently, doing the acting thing and another major book project is in the works.

As for the autistic factor, I've had some years to consider how it may have affected my career. The many tests and observations, from professionals involved in my diagnosis, helped me discover special abilities including a photographic memory, high audible sensitivity and a stubborn tunnel-visioned focus. I use every bit of these abilities in this industry and have sharpened them once becoming aware of their benefit.

TPGA: How did getting an official diagnosis, and understanding that you are an autistic person shift your self-awareness, if at all?

MB: Coming to the conclusion (after all the testing) that I wasn't crazy or losing my mind was an important discovery. Knowing that my brain is wired to do specific things helped me build a positive perception of myself as unique versus damaged. I'd say that was a massive shift for the better.

TPGA: What are some specific positive experiences of being both Black and autistic that are lost to people who don't share your experience?

MB: The positive for me? OK. Follow my logic, here. “Black” people on the spectrum are not covered in the media very much, if at all. So, the perception is, since very few, if any, POC (people of color) are on the spectrum, the large majority of “Black” people must be... "normal." This misperception allows me to do business "under the radar," because I can choose to avoid being patronized or pitied. Otherwise, because of stigma, it would be difficult for me to secure a decent living and do serious business. This prejudice is ten times worse for Black and POC. I can't do my work with that kind of hassle. It sucks, but that's my reality for the kind of work I do.

The other positive, I've been told, is that other Black and POC see the revealing of my autistic status as empowering for them. I don't see myself as a role model, but, if openness about my diagnosis empowers other POC toward the positive, I'm all for it.

TPGA: How connected are you to the Black and POC autistic community, or to other autistic individuals, and are those connections a source of strength and comfort?

MB: I have a few amazing intimate relationships with some, a cozy cordial relationship with groups of others and virtually no relationship with the majority of autistic POC. It's complicated. I have deeply private ways of drawing strength and comfort. I'll leave the matter there.

That said, I want to do more to connect with Black and POC in our autistic community. However, much is expected of me due to being a public figure. Being public is expensive. Folks want to see more of me and that's cool, but, I don't have some bottomless budget allowing me to do that. For those who want to see or hear from me in major public forums, sponsor my visit. I'll do it! I'm proud to be an autistic POC and really want to share my experiences. I have some pretty cool stories that may help other autistic POC persevere through our many difficult experiences or circumstances.

TPGA: We already know the rate of anxiety disorders among autistic people in general is already much higher than the non-autistic population. Can you talk about why that anxiety may be even more intense for Black autistic people, and how for you it sometimes feels like "living under occupation"?

MB: Black people (men, specifically) are seen, by many, in society as dangerous, suspicious, and without moral compulsion, first. This, I feel, has been by design for hundreds of years. I don't see it changing. This reality makes life even more intense for Black autistic men.

You may remember a very popular news video of therapist Charles Kinsey (lying down with hands up) and his autistic client, Arnaldo Rios, not moving at all, but, seen, by police, as dangerous—and shots were fired at both of them. Even a Black man attempting to protect an autistic person of color will get shot at...for no reason, apparently. We cannot assimilate. Our brown skin is not interchangeable.

Since simply being brown can be the reason a police officer beats, chokes or shoots me, that feels a lot like living under occupation. Intimidation via the threat of death. I never feel truly safe. The only adjustment I've made is how often I look over my shoulder to ensure I'm a safe distance from encountering any authority figure carrying a gun.

TPGA: Can you be incredibly frank with our readers about why being both disabled and a person of color puts a body at higher risk of a dangerous police encounter than being only in one category or the other? I am thinking of specific, horrifying recent incidents like the shootings of Keith Lamont Scott, and Alfred Olango.

MB: Right. Specifically in cases like those of Mr. Scott and Mr. Olango, Black men, again, in general, have endured a multi-century campaign of discrimination, mischaracterization, defamation and dehumanization. It's easy to destroy, discard, or even kill something not seen as having any societal value worth saving or caring about.

This is the risk Black men and other POC live with everyday. Add to this fact that the two aforementioned men were battling mental or emotional issues, Mr. Scott's brought on by an accident and Mr. Olango's less defined, the chances of them living through their encounters with police were slim to none.

TPGA: Why do you think discussions about autism and from autistic activists needs to be cleaner and simpler than they generally have been? What are some examples of the kind of communication you'd like to see?

MB: Too often discussions about autism or autistic people are muddied when people confuse co-occurring issues with being autistic. What do I mean? I have OCD, or Obsessive Compulsive Disorder (think Howie Mandel). But OCD is not part of my autism.

By being clear about what autism is and what it isn't, we can keep discussions about autism or autistic accurate, as well as allowing people to get unvarnished stories directly from us. No political or partisan tangents. I believe this clarity will have a more powerful impact on those who aren't autistic, and hopefully lead to increased empathy for us and our challenges.

TPGA: Do you have any specific messages of reassurance or advice for today's younger Black and POC autistics?

MB: If you can, get evaluated. Yes, many Black and POC communities are still in the dark ages in terms of their attitude about neurological conditions. The stigma is widely known. Just know you're not broken or flawed. You're unique. You may even have special neurological wiring giving you an edge over your non-autistic contemporaries. Embrace it. Work with it. See it as an amazing thing. Feel free to connect with other seasoned (but positive) autistic adults as mentors. Remain hopeful. Focus on accomplishing the thing that will allow you the freedom to care for yourself and help others. Avoid using it as an excuse when you fail for other reasons, or, as something to exploit. Love yourself and others will be attracted to that.

Thursday, September 7, 2017

Study Shows that Puzzle Pieces Evoke Negativity from the Public

Morton Ann Gernsbacher
www.gernsbacherlab.org


[Image: Melanie Yergeau, a white person who presents as a
woman with shoulder-length blond hair, holding a sign
that has a puzzle piece image with a red slash through it
and the wording, “People not puzzles.”] 
Why was the study conducted?

They’re everywhere. On the lapels of NCAA basketball coaches during the Final Four. On a FOX reporter’s bowtie during the World Series. On bumper stickers, backpacks, bracelets, beer koozies, tote bags, and the background of a prime-time soap opera.

They are puzzle pieces intended to represent autism (and autistic people).

Symbolizing autism with a puzzle piece began with the UK’s National Autistic Society:
"… designed by a [non-autistic] parent … It first appeared on our stationary and then on our newsletter in April 1963. Our Society was the first autistic society in the world, and our puzzle piece has … been adopted by all the autistic societies which have followed."
The puzzle piece was chosen, as Helen Green Allison later related, "because it tells us something about autism: our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not 'fit in'."

Evoking negativity was, therefore, the primary motivation for using puzzle pieces to symbolize autism. In current day, many autistic and non-autistic people (e.g., Kabie Brook, Judy Endow, Ruti Regan, Alyssa Hillary, C. S. Wyatt, Ed Ised, Autistic Alex, Dan Edmunds, Melanie Yergeau, Adam Thometz, Tim Turner) argue that puzzle pieces continue to evoke negativity.

However, other people have suggested that puzzle pieces instead evoke positivity or that the “positives … outweigh the negatives.” Therefore, in a recent study (full manuscript here and data/stimuli here) Bev Harp, Jilana Boston, Jennifer Stevenson, Adam Raimond, and I empirically investigated whether puzzle pieces evoke negativity or positivity in the general public.

How was the study conducted?

With a sample of 400 members of the general public, we measured both their explicit biases and their implicit biases toward puzzle pieces in general and autism puzzle piece logos in particular. A bit over half our sample identified as men, a bit under half identified as women, and around 1% identified outside the gender binary. Almost all participants had lived in the United States for the past five years, and they ranged in age from 20 to 75. About 0.5% identified as having an autism spectrum diagnosis; 3% identified as working with autistic persons; 12% as being a friend of an autistic person; and 15% as having an autistic relative.

We administered an implicit associations task, which is a speeded categorization task for measuring implicit attitudes (including attitudes toward images of brands). Participants rapidly categorized images of puzzle pieces and non-puzzle piece shapes. On test trials, the puzzle pieces and shapes were paired with either negative words (such as grief or agony) or positive words (such as cheer or paradise). Categorizing puzzle pieces faster than shapes when they were paired with negative words indicated greater implicit negativity.


[Image: Pair of example generic stimuli from the study. The first image of the pair
 comprises a golden tone puzzle piece with the words SHAPE and POSITIVE
in the upper lefthand corner and the words PUZZLE and NEGATIVE
in the upper righthand corner. The second image comprises a golden tone circle
with the words SHAPE and POSITIVE in the upper lefthand corner
 and the words PUZZLE and NEGATIVE in the upper righthand corner.]
[Image: Pair of example logo stimuli from the study.
The first image of the pair comprises a green puzzle piece with red and gold borders
and the word “Autism” superimposed on it, with the words SHAPE and POSITIVE
 in the upper lefthand corner and the words PUZZLE and NEGATIVE
in the upper righthand corner. The second image of the pair comprises a green circle
with red and gold borders with the word “Autism” superimposed on it,
with the words SHAPE and POSITIVE in the upper lefthand corner
and the words PUZZLE and NEGATIVE in the upper righthand corner.]
We also administered an explicit associations task, which is a standard task for assessing explicit attitudes toward brands. Without any time-pressure, participants completed the two sentences: “When I see a puzzle piece, the first few thoughts that come to my mind are ____” and “When I see a shape, the first few thoughts that come to my mind are ____.” Participants were asked to list five associations for puzzle pieces and five associations for shapes, and their associations were later sorted into mutually exclusive categories (e.g., negative associations, such as “problem,” “bad,” and “sad,” or positive associations, such as “fun,” “happy,” and “good”).

What were the study’s results?

The study’s results demonstrated that puzzle pieces evoke negativity from the public—both implicit negativity and explicit negativity. During the implicit associations task, participants categorized puzzle pieces significantly faster than they categorized shapes when the puzzle pieces or shapes were paired with negative words (t(399)=-7.661, p<.001).

A standardized metric known as the Implicit Association Test score also demonstrated that participants’ implicit bias against puzzle pieces, both generic puzzle pieces and those used as autism logos was significantly negative (t(399)=-5.357, p<.001).

During the explicit associations task, participants provided considerably more negative explicit associations to puzzle pieces than to shapes (z=4.693, p<.001, d=0.491). In fact, half the participants’ negative versus positive explicit associations to puzzle pieces were negative (in contrast, only a third of their explicit associations to shapes were negative).

Participants explicitly associated puzzle pieces, even generic puzzle pieces, with incompleteness, imperfection, and oddity.

What policies do the results suggest?

This study’s results suggest that if an organization wants to evoke negativity from the public, using puzzle pieces is the way to go. Puzzle pieces evoke negativity. However, if an organization wants to evoke positivity about autism, puzzle-piece imagery is probably not the way to go.   

As autistic author, artist, and international speaker, Judy Endow, MSW, has concluded, because “of the negative message about autism the general public now associates with the puzzle piece, any positive programming on behalf of supporting autistics is undermined by use of the puzzle piece logo.”

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.