The Autism Closet: Outing my child

Open Your Doors

Image by Frank Wuestefeld via Flickr

I’ve had two and a half years of chances to “out” my child as autistic. Whether it’s to family, friends, employers, landlords, neighbours, or strangers. In each situation I’ve had to make a decision about whether it’s the right thing to do for me and my son.

Some situations are such regular occurences, that I have established personal “best practice” rules (such as when interacting with strangers and their children in public playgrounds). Even then though I have to take into account variables – if the parent I’m talking to shows an awareness and (positive as opposed to judgmental) interest in my son’s unusual behaviour, I am far more likely to talk about his autism.

There are both positive and negative considerations on whether, and how soon, to say my child is autistic. Before I go through them, I want to be clear that they don’t include a sense of shame about my son’s autism. I do not think that having an autistic child makes me a worse person or a worse mother. I feel no need to have everyone tell me how superior my son is to other children (“mompetiton“), so in turn I feel no shame with the fact that he is developmentally delayed and not able to do what most children his age can. With that out of the way, here are some of the key considerations:

Discrimination, directed towards either myself or my son: If I think someone is going to treat us worse because of my son’s autism, I will not share it. Examples are applying for a rental property or a new job. If it’s absolutely essential that they know, of course I’ll share the information despite the potential discrimination. But I am fully aware of the ignorance and confusion that abounds about autism. If I’d told our landlord in our application that our son had autism, there’s a good likelihood they would have been reminded of stories about autistic children destroying rental properties, without understanding that not every autistic child exhibits those behaviours.

Similarly, in applying for jobs, having an autistic son can mean it’s harder for us as parents to do over-time or stand in for other workers when they are sick. But because we only take jobs which match the hours we are able to work with as a family, our son’s autism is largely irrelevant. If we told every employer at the outset that we have a special needs child, they may (wrongfully) presume us to take lots of days off work to deal with our son. Again, that is true of some families with an autistic child, but not ours. (I want to be clear though, I’m not saying those families deserve to be discriminated against, I’m just explaining that such concerns would be irrelevant regardless for our family.)

Explanation is another reason for sharing the fact of my son’s autism. If his behaviour is confusing or upsetting other people (for example, his happy dance has frequently been mistaken for an expression of anger), then I will bring up his autism to explain what is going on. If someone has invited me (and perhaps my whole family) to attend events and I keep turning them down, I will explain that my son’s autism affects my availability and what we can do as a family, in order to avoid appearing rude or uninterested in the event.

My own friendships. In order for me to make new friends, and even to maintain old friendships, I have found I need to be open about my son having autism, since it is so utterly central and impactful on almost every area of my life. Maybe years from now it won’t be so central to my world, because his autism will be less severe, but for now it most definitely is.

The reactions when I tell people my son has autism, are predictably diverse. There are those who find it interesting and want to know more about autism and its impact. There are those who put distance between themselves and their child, from me and mine. There is a rather large contingent of people who don’t know what to say, so just smile politely, and continue doing and saying whatever they were doing and saying as if I hadn’t said a word about it.

But there is a special group of people I encounter every so often, which is one of the reasons I tend towards being open about my son’s autism, rather than leaning towards hiding or ignoring it. They are the people who respond by saying they also have a family member with autism, or have taught people with autism, or are passionate about helping people with autism (you can insert the word “special needs” instead of “autism” there too). The knowledge of my son’s autism / special needs, provides an instant bond and learning opportunity. I know they then have a certain intimate understanding of my son and myself, that is otherwise hard to convey (though I find after friends and family have read my blog, that they get a good feel for what it’s like – blogging is great). After I meet these people, I always walk away feeling uplifted and happier than when I started out.

Whether you decide to “out” your child or not, and when, depends on the severity of the autism (which may change over time), and the situations you find yourself in. It’s another one of those topics where I suspect experience will change my attitudes over time – towards sharing the fact of his autism more or less than I currently do. I would be interested in hearing about your own attitudes and experiences, and what other factors you personally take into account when trying to make the decision about telling people that your child has autism.

***

I was inspired to write this post after reading this over at Autism Army Mom’s blog. I recommend popping over for a read (the comments are interesting too).

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Gallery | This entry was posted in Attitudes to Autism, Parenting an Autistic Child, Re blogging about Autism and tagged , , , , , . Bookmark the permalink.

15 Responses to The Autism Closet: Outing my child

  1. Melissa says:

    My daughter has made a bunch of progress over the last year, year and a half. That said, we have a ways to go. She’s in that area where I can take her places with other kids and because she’s young the older kids are usually pretty tolerant of her. Unless she’s ignoring them altogether in favor of sticks and dirt and bugs and leaves. And running. Kids her own age, she just isn’t there yet with. She’s sort of interested in them, sometimes…. especially if there’s a game of chase involved…. but otherwise? They may or may not get that… the parents do. Whether or not they know she’s autistic? I don’t know. I’ve had some people make comments at the park to their kids. And I’ve had some people just be really kind. I’m pretty open about it, but like you, not to everyone and not EVERYWHERE.

    I went through a phase, just after getting her first evaluation… where I pretty much fell off the face of the planet. And if you hadn’t heard about the first one, I damn sure wasn’t going back and telling you the entire story over again. It was too much. It didn’t seem to me to be a “how is your day” type of event. So a lot of people sort of fell off my radar. There are a FEW who stayed on. THOSE are the people who, even last year when progress was slower, meltdowns were more, there was no language, etc etc etc… got the entire story and STILL had us at their house to play. (and for wine)

    A second group (third?) of people are ones like my in-laws… not the entire family, mind you. But definitely a specific arm of them. Who insist that things she is doing are “totally typical”. Or that “everybody catches up”. I would say it is a generational thing, except that some of these people are my own age. Unfortunately, I cannot get away from them – and I have tried explaining. So I mostly try to ignore, and not give them too much news.

    • Thanks for sharing that Melissa. I’ve had a lot of the same or very similar experiences. In particular, I still deal with people (who should know better) telling me that my son will just catch up, and that someday no one will even know he is autistic. They say that with no reason or experience to back it up. I’m sure they think they’re being helpful, but it always leaves me feeling that they don’t understand autism, or my son, or the challenges we face, despite my frequent efforts to make all of that clear to them. I try not to let it get to me, but it always does (though admittedly not as much as it used to).

      • Melissa says:

        Again, I came back to this post today…. because as I was fundraising for my daughter’s school… I realized I DO actually “out” her a bit more than I thought. Admittedly, for a good cause, and to people who may never see her face – the word helps them understand. And, I attribute a lot to her school and the people who have worked with her. If it helps….

        As far as the rest, on any given day, there is such a mix of emotions. You say it well, in fact that’s pretty much exactly it. I’m still not past the anger, perhaps it will get better in time.

        But I also get a little sad (and it’s so easy to do this when you’re getting evaluations and progress reports every 3 months) when everything she does is looked at through Autism’s lens. For instance, she hums – before she started to speak she hummed with inflection, sort of – but she also hums Beethoven, Mozart, Bach. (Baby Einstein CAN be educational AND we’re musicians) Humming can be seen as task aviodant if you don’t know the song. Sometimes it is. But … not all the time. I think that’s maybe a 4th response that I get.

  2. sharon says:

    I am on exactly the same page as you on this. When Harri was first was dx I told everyone, I think as a way of processing the information myself. Now I’m a little more discriminating, but like yourself enjoy the opportunity to connect and share with others when appropriate.
    I had to laugh at your comment about some carrying on as if they had not heard. I too had that occur recently. Peoples reactions are a constant source of fascination to me.

    • That’s a good point about telling everyone early on, as a way to process the information. I went through the same sort of stage – often telling people without knowing why I was sharing it, and against my better judgment (live and learn). The idea that it was part of coming to terms with it, and part of trying to understand what it meant to say “I have a child with autism”, is an interesting one. I hadn’t thought about it quite like that before, and I think you’re quite right.

  3. KWombles says:

    Great post. I tend to be very open about autism in our lives; the reaction that still floors me is the “Oh, I’m so sorry.” No matter what we’re dealing with, sorry isn’t what I want. I’m not asking for sympathy; I’m offering a descriptor that will explain that my children perceive and react differently than other children, that there are developmental delays that may need to be taken into account. It may be that the answer is to shift from offering a label that encompasses such a wide array of characteristics so as to be almost useless to explain a child’s issues (except perhaps to those intimately familiar with the flavors of autism) to offering concrete descriptors of the particular challenges our child(ren) might face in specific situations.

    Thanks for a post that provides lots to think about.

    • Good point KWombles – saying “my child has autism” can mean so many different things, and to many people might mean nothing at all. Describing it in terms of the impact on the specific child does sound like an improvement.

      Obviously it still depends on the situation, such as when I’ve taken my son to the hairdressers and tried to explain that having his hair sprayed with water scares the heck out of him, and they dismiss it and say “well it won’t take long” and do it anyway. I had to learn to be stronger in my explanation of the problem, and have ended up saying “he has an intellectual disability” (I do not like saying that as a turn of phrase for autism, but people do respond to it), which they seem to take more seriously. Since calling it that, the hairdressers have got more inventive about not using water at all, and just doing a dry cut, or just using a wet comb instead. I suppose it’s all part of the problem of educating the public about what it means to say someone has autism, and what autism is in the first place.

  4. Mom says:

    You are an inspiring woman. I am considering this very thing and questioning how to proceed in a very similar manner. Thank you for sharing this. I feel that if I do decide to “Out” my child, I must immediately proceed to educate. There are many misconceptions about Autism and how it affects each person individually. I do not want my child to be viewed as an “Autistic” first, and a person last. She is a fantastic little girl!

  5. Tem says:

    Well, for another perspective, I’m an autistic kid, I have Asperger’s. I’ll come out only when I have a really good reason to, I’ve told four people and have been outed to a group once by a friend. The people who are going to judge me for my odd behaviors are not going to change their opinions if they know I have AS, they’re just going to stereotype. People who don’t know me very well don’t need to know, they’re just going to form misconceptions. People who do know me and accept my differences usually don’t need to know, because if they already accept me there’s no reason to tell them. If something specific comes up, I’ll come out.

  6. Mom says:

    Tem, I find your comment very interesting and I agree. My child is very young now. I look forward to hearing her perspective on things. I will take a page from you until then. Thank you.

  7. Tyler says:

    I tell people I am autistic sometimes, perhaps because I think it is courageous to admit. I was at church and the priest said we need more gun control, this was after the massacre. I was having after church coffee with my girlfriend who brought me there like some kinda forreal adult when one of the women commented that what really caused the shooting was Aspergers, oh great. Now were mass murderers, in additions to being unfeeling robots retards selfish geeks like Sheldon from the Big Bang Theory(admittedly probably the more palatable of those stereotypes but still a stereotype) we are now mass murderers. I would not like to be outed without making the conscious decision myself. Even if you get that being Autistic isn’t really a bad thing it certainly doesn’t mean other people get it. It never helps you get a job for instance to mention it, basically guarantees you will not. They say 85 percent of Autistics are unemployed, lol, I mean the number is probably high but not that high, because Autistic people who work don’t typically mention it out loud. They may not even be diagnosed, doesn’t mean they aren’t actually Autistic. Perhaps some of the richest people in the world these days are these deep closet Autistics in the high tech/software industry. Its funny how a group people can be deeply oppressed and stigmatized despite a few individuals being highly successful.

  8. lesleyann says:

    ive found this post rather interesting, my 9yr old son hasnt been diagnosed yet,(he’s just finished assesment stage with S.L.T) but i have been told by s.l.t that its more likely than not aspergers syndrome he has. Telling people has got me rather concerned due to these labels that have been attached to aspergers/autisim, seems like there isnt that much awareness out there to make people understand what exactly autism is, and that each individual is different no matter if they have autism or not. i have told a few friends as well as family in the hope that it helps them understand my son better as i felt like they just thought my son was strange with some of the behaviours/ conversations he had around them, thankfully they now understand and i dont feel like there looking at him as if hes an alien, as for the others in playgrounds, mcdonalds etc well thats just another story, but i still have that hope that one day autistic children and adults will just be accepted for the people they are…. humans like us norms (as ive once heard from someone i had asked what theyre impression of autism was)… lets just say i didnt feel comfortable telling that person about my son.. any advice would be greatfully appreciated

  9. Pingback: Why is autism so poorly understood? | kamaha13

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