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Key points
- Sharing an adult autism diagnosis is a very significant experience for many.
- Yet autistic adults are sometimes met with responses which feel invalidating or upsetting.
- Understanding why people respond in invalidating ways can help autistic adults respond, or even educate them.
- Finding a way to have your diagnosis recognised by others can be empowering and validating.
When I meet recently diagnosed autistic people—either those who have been formally diagnosed or those who have chosen to self-diagnose—they often ask me: How should I share my diagnosis?
Many autistic people feel validated by a diagnosis because they finally have an explanation for the difficulties they've faced throughout their lives. They’re ready to move forward, which often includes sharing their news.
Doing so not only allows them to seek out formal support if needed. It also allows them to explain clearly to family and friends why they process things differently and the type of changes they might want to make now they know they’re autistic. Yet people are often worried about how others will respond, or feel pressured into telling their friends and families about being autistic as soon as possible, without a clear idea of what to expect or how to deal with other people’s responses.
While friends and family are often supportive, some autistic people find that their loved ones refuse to believe they are autistic; others find that people close to them just aren’t interested in their diagnosis. Dealing with this type of response can be difficult and upsetting. Here's why.
5 Common Responses Newly Diagnosed Autistic Adults Face
1. “Cool. So…”
Many autistic people diagnosed in adulthood feel that their diagnosis is life-changing—and because of this, sharing it with friends and family feels deeply significant. But sometimes, they don’t get much of a reaction.
When this has happened to my clients, they often feel upset and invalidated. Some even start feeling that their loved one has an ulterior motive for failing to acknowledge the significance of their diagnosis.
While this may of course be true, it might also be that the person on the receiving end of the news simply doesn’t understand how important the diagnosis is. They might simply see you as you and not feel that your diagnosis changes anything in your relationship with them.
In that case, it’s essential to explain how important your diagnosis is and that you might need to talk about it further or discuss how it impacts you. Starting by giving them the benefit of the doubt could help foster a more fruitful, understanding conversation.
2. “You don’t look autistic.”
Hearing this can feel soul-destroying—particularly for someone who has put a lot of effort into camouflaging their autistic symptoms.
Yet this type of comment often stems from a lack of knowledge about what autism is. Explaining that autism is a wide spectrum and that many people "camouflage" their autistic traits—meaning they go to great lengths to hide their autistic symptoms—or learn techniques to cope with social situations and cover up their social discomfort can help others challenge their existing (often incomplete) knowledge.
This does not mean you have a responsibility to teach them the ins and outs of autism. Once you’ve explained what autism is, the other person is responsible for learning more about how autistic people may present.
3. “You didn’t do that before you knew you were autistic.”
Sometimes, people diagnosed in adulthood are challenged about their seemingly “new” autistic behaviour. Yet what's often actually happening is that after a diagnosis, many autistic people begin to “unmask”—in other words, they stop engaging in some camouflaging behaviours. This might mean being more open about their needs, engaging in repetitive behaviours, or avoiding situations they struggle to cope with.
Being challenged in this way can feel like an accusation. It can make autistic people feel as if they’re making up their autistic behaviours, triggering the imposter syndrome that is so common after a diagnosis.
Often, this type of response comes from a place of genuine confusion; the person who voices this opinion might truly struggle to understand why you’re acting differently. Explaining that you have spent a lifetime camouflaging and are now being open about your experience may be sufficient to clear up that confusion.
However, this response can also be used as a put-down by people who will not acknowledge you are autistic—perhaps because they’re scared of what that entails for them or because they refuse to validate your experience. In that case, you might need to reiterate that you have always felt what you now display. If they continue to criticise your “new” behaviours, you might need to rethink your role in the relationship.
4. “My brother/friend/colleague is autistic, and you’re nothing like them.”
Once again, although this can certainly feel invalidating, it often comes from a lack of knowledge. Autism is a spectrum, and if people know a family member, colleague, or friend who is autistic, it’s natural that they might not recognise your autistic traits as having much in common with others they know.
Educating them about the autism spectrum and the difference between level 1, level 2 and level 3 autism—including the fact that people with level 2 and 3 autism may have additional support needs and/or learning disabilities—can help them understand that autistic people may share certain traits while still presenting very differently. In addition to educating them about the differences, you can explain the similarities across the autism spectrum, including a need for routine, differences in social communication and sensory processing issues.
5. “You’re high functioning, right? It’s not real autism?”
There’s an assumption that having level 1 autism excludes you from having “real” autism, which, in turn, is equated with autism that requires additional support. If you can live an independent life and, perhaps have a job, relationship, or children, surely you can’t have "real" autism, right?
But the term “high-functioning” is primarily discredited by the autistic community because it hides the often very severe struggles that people with level 1 autism (which is generally what's being referred to by the term "high-functioning") face. It also can come across as judgemental of those with level 2 or level 3 autism.
If someone responds to your news this way, remind them that level 1 autism is an actual condition, according to the psychiatrists who decide the criteria for neurological conditions and mental health issues. It might differ from level 2 or 3, but it’s certainly no less real.
What Matters Most
Dealing with any of the responses listed above can be challenging. But what's most important after a diagnosis is that you have knowledge and validation regarding your autistic traits. If seeing a therapist would help you get there, you can find one in the Psychology Today Therapy Directory.
