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.