This article appeared on April 22, 2017 on Spectrum Women Magazine  

by Maura Campbell

Whether to disclose an autism diagnosis is an important issue for many newly diagnosed adults. I would never presume to tell someone in that position what to do, though I would encourage them to take a bit of time to think about it.  What is said cannot subsequently be unsaid.

After I was told, in a private consultation, that I had Asperger Syndrome I pretty much burst out of the Aspie closet immediately.  I hadn’t given the matter of disclosure much thought, which was uncharacteristic for me since I usually overthink practically everything.  I was so euphoric on the day of the diagnosis that I simply couldn’t wait to tell the world.  Finally, my whole life up until that point made sense! The relief was enormous. I felt hopeful. It was a hugely significant moment in my life and I wanted to share it. It didn’t occur to me that other people might not see it quite the way I did.

But “out and proud” is not necessarily right for everyone.  I know many people who have chosen not to disclose their diagnosis for entirely valid reasons and I completely respect their decision.

Disclosure made sense for me at the time. I was at a stage in my life where I didn’t feel I had to prove myself, since I was in a stable relationship and well established in my career, and so there was no real downside. The fact that I had a child on the spectrum was also a factor; having decided early on to be open about his diagnosis, it seemed wrong to be coy about mine.  Whether or not to disclose you have autism depends very much, therefore, on your personal circumstances.

As well as the question of whether you should disclose, some other considerations are:

Who – deciding the order in which you want to tell people and how many people you wish to tell.

What – thinking about how much information you want to give them.

When – the day of your diagnosis might provide a natural catalyst for talking about it or you might want to give yourself a period of time to get used to the idea of being on the spectrum before you open up to others about it.

Where – partial disclosure might be appropriate (for example, you might want to tell friends and family but not work colleagues or customers, at least initially).

How – this could be face-to-face, over the phone, in a text, through social media or in writing, depending on who you are telling and your own communication preferences.

As a rule of thumb, you could ask yourself the question, “Is telling this person or group of people I have autism likely to have mainly positive or negative consequences for me?”. I’ve heard people say they believe that an autism diagnosis has been used against them in legal proceedings or disputes with service providers, for instance. On the other hand, I have also heard encouraging stories of a diagnosis helping to repair damaged relationships because people have been able to reverse engineer earlier failures in communication or understanding.

If you are unsure, working through the “pros” and “cons” of disclosure might be a useful exercise.

The “cons”

People may be uncomfortable when you tell them you have autism. Or they may be unsure how to respond for fear of saying the wrong thing.  Be prepared for awkward silences.

If you don’t meet others’ expectations of what autism looks like, you may be challenged on whether you are autistic at all. This can happen either when you mention to someone that you’re minded to seek a diagnosis or after you have been formally diagnosed. People probably mean well enough when they say things like “but you seem so normal…” However, it exposes a negative attitude towards autism among the general populace. Saying you have autism may seem to them like you are admitting to being defective and so they may be eager to “reassure” you that you can’t possibly be autistic.  This probably happens more with women, who are often good at masking their autism and who may have flown under the radar because they are more adept socially than their male counterparts.

The underlying problem is how the world still sees autism. The terminology that surrounds it tends to be overly pathologised – take the word “diagnosis”, for example – and is usually deficits based.  It doesn’t help that often autism is misrepresented as a mental health condition and people are described as “suffering” from autism or Asperger’s. People may, therefore, see you as having a medical problem.

When I “came out”, I was asked a couple of times what treatment I was receiving. No matter how hard I tried to tell people that the diagnosis was a positive event, a confirmation of who I already was, they behaved as though I was conveying bad news. What I learned from this was that people do not always receive information in the same way as you present it to them. They often apply their own filters, overlaying what you have said with their own preconceptions and assumptions.

Occasionally, saying you are autistic could be perceived as attention seeking. Many adults pursue diagnosis after their child has been diagnosed, which could be misinterpreted  as an effort to draw attention back to themselves.

You may well be challenged on why you would want to “label” yourself in this way. I have often found myself in a position where I’ve had to explain or even defend my decision to pursue a diagnosis in the first place.  I tend to tell people that if anyone should think less of me because I am on the autistic spectrum, then that’s their problem: I proceed on the basis that “those who mind don’t matter and those who matter don’t mind”, to quote the wonderful Dr Seuss (a probably Aspie).

The “pros”

On the other hand, finally being able to be your true self in front of others can feel like taking off a corset you didn’t know you’d been wearing for years.

Disclosure makes it easier to open up a conversation with someone about how they can better accommodate your needs, or perhaps how you can meet each other half-way.  You may be able to request reasonable accommodations in the workplace, for example.

It may make it easier to leave a social event early, or by-pass it altogether, without causing offense. Once people understand that there is a valid reason why you may not always be able to participate in certain activities, it can take a lot of pressure off you.

Disclosure creates the potential to re-evaluate the dynamics of your relationships with other people and reduce the risk of unnecessary conflicts in the future.  You will quickly find out who will celebrate your new sense of self with you and who will see it as a weapon with which to beat you. Your respect and appreciation of the former will grow and you will learn not to waste your valuable time on the latter.

It affords you a certain credibility when you give your opinion on issues relating to autism, especially if you can draw on direct experience. A key benefit for me of a formal diagnosis is that it has made me a lot more confident as a parent because I now trust my own instincts much more than I did before.

Disclosure provides opportunities to educate and inform other people about autism, and to advocate on behalf of those within our community who may not be in as good a position to do so for themselves. It allows you to challenge head-on the myths and misconceptions that abound about autism, partly due to its stereotypical portrayal in the media and popular culture.  When people express surprise that I have Asperger’s (which is generally the case), I have an opening to correct some of the inaccurate impressions they may have about autism in a way that is more impactful than if I were talking to them solely as a parent of an autistic child.

Neurodiversity – the idea that autism is part of natural human diversity – is starting to make some inroads in terms of challenging the established orthodoxy on how autism should be viewed, recently helped by the publication of Steve Silberman’s game-changing “Neurotribes”, but there is still a long way to go.  The concept of autism as an identity is at an earlier stage in its journey as a civil rights issue than other comparable causes, such as LGBT rights (though the fact that Barry Manilow didn’t feel comfortable about coming out at 73 years old suggests that disclosure is still a real issue for at least some in the gay community).

As well as there being benefits for the individual, therefore, there is a wider issue at stake.  If people feel they have to maintain their silence because they fear the reaction they will get, the reaction will not change. Societal reactions to autism are unlikely to improve unless stereotypical, prejudicial and discriminatory attitudes towards it are rebutted. No one individual should be judged, held accountable or made to feel guilty for contributing to this circular phenomenon because they are reluctant to disclose but it does mean that we need to build a critical mass of people who can go public.

It is starting to happen.  I credit Rudy Simone’s “Aspergirls” with giving me and many other women a new sense of identity and community.  This pioneering work, and the personal example of the ultimate “Aspergirl”, gave some of us the confidence to step forward and speak our truths.

Hopefully many others will do so in the future as well .