Who should I tell about my diagnosis?

Taking some time before you start this process to think seriously about who you want or need to tell is important. Post-diagnostic euphoria can skew your perspective and you may find you cannot stop talking about the result to all and sundry.

In an ideal world it would not be necessary to even think about this, but people’s reactions can vary widely. Of course, some people do not really get a choice with disclosure. Rightly or wrongly other people make the decision for them. But, where you do have a choice, a bit of thought could be useful – because the reality is, we do not live in an ideal world.

Many people will greet the news with interest, perhaps curiosity, maybe ambivalence, perhaps even disbelief if you have been masking for decades.

However, some people’s view of you may change overnight, influenced by the stereotypes and myths they have absorbed over time. Others may change how they interact with you, distancing themselves, prejudging your needs or dismissing or exaggerating your challenges.

It is not always possible to work out how people will react, even those you know well. But if you can, identify a few ‘safe’ people to try disclosure out on first. There will be people in your immediate circle who probably need to know – a partner or parent, but even here your relationship with that person needs a bit of thought.

Sadly it is the case that Autistic people can be more vulnerable to abuse and manipulation than our Neurotypical counterparts. Challenges around social interaction, reading intent and nuance, coupled with wonderful strengths in honesty, trust and loyalty can make us targets for the unscrupulous or careless and this can be family members as well as friends, acquaintances and work colleagues.

Each group needs to be thought about, and it may be that full disclosure is neither necessary nor desirable in every case.

“The safeness of the environment [should be] taken into account; in one situation outness may be therapeutic and in another, outness could be considered a risk.” M. Botha

So the obvious groups to think about are:

  • Family
  • Friends
  • Employers and colleagues
  • Educational institutions

And within each of these groups there are considerations beyond how they might react. For example: what questions might your revelation raise for other family members about themselves or other members of the family? Will your employer question your abilities, or change the way they work with you?

Taking a work example:

The HR department may need to know your full diagnosis to justify any additional expenditure needed for specific accommodations. Many workplaces are willing and able to make these accommodations, but any financial costs will likely come from a specific budget. Your line manager may benefit from knowing too, particularly if there are to be new accommodations around the way you schedule or deliver work for example. The same is true for colleagues. However in the latter two cases it is debatable whether they need to know the full diagnosis. Signposting a specific need may be sufficient. An example of signposting might be those people who experience significant sensitivity to sound now introducing headphones or using quiet workspaces. This change does not require full disclosure, simply signposting distractibility could be enough – there may be no need to describe the distress and overload which may also accompany the sensitivity.

Similarly, a young adult telling their parents about their diagnosis may present one set of challenges but telling the grandparents may be quite another. The older generation grew up in an era where “refrigerator mothers” were commonly blamed for a child’s Autism and they may have not moved on from this. There is of course an argument for having this discussion with them regardless, but it is about picking your battles, working out whether such disclosure is going to make your life easier or harder. Again signposting specific needs may be sufficient.

In addition to who to tell and when, there is the how.

In the early days post diagnosis, think about whether you know enough about Autism yourself to be able to support any discussion the other person wants to engage in. With employers and educational institutions, they are going to need to know exactly what you expect them to do with this information. This is going to be a lot easier if you understand the implications of Autism in your own specific case and can use terminology which they understand to back this up. For example: feeling anxious around people might be what you end up saying, when in fact this is just the symptom of having difficulty understanding body language, nuance, and social rules. Telling them you are anxious doesn’t really help them understand what they need to do differently. In the same way telling people that noise is a problem doesn’t give an idea of the scale or the impact of it on your functioning. Clarifying the types of noise which causes problems, the impact it has for your work and what accommodations you would like to see, makes the conversation more constructive.

Disclosure is not as straightforward as you might initially think and is yet another of those areas where guidance could prove invaluable. Full disclosure cannot be reversed, and rightly or wrongly, it is not always the best approach. Identify your aims as well as your ‘safe’ people, and educating people about Neurodiversity can be exhausting, so share with care