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I spend a lot of time talking to clients who are coming to terms with their autism diagnosis. For many, the initial act of working up to an assessment and receiving confirmation that they are autistic comes with a massive sense of relief. It brings answers, it explains past experiences, and it provides a sense of permission to start changing their lives as they move forward. This is backed up by research into the experiences of women diagnosed as autistic1.
That initial sense of relief, though, often comes and goes, and post-diagnosis autistic adults often struggle with their identity. They might feel pressured into creating a different type of life, but they don’t know what that life looks like. And many people feel a sense of exhaustion and confusion, along with a sense of finding things harder than they were prior to a diagnosis.
When someone finds out they’re autistic, social situations often feel harder. The pressure of keeping going to work becomes too much and sensory processing issues feel more impactful. This can feel worrying and disconcerting, particularly when people were expecting their diagnosis to make their lives feel better—not more challenging.
Here are five tips to get through the initial stages after a diagnosis.
1. Think of it as a process
There’s such a lead-up to a diagnosis that it can feel like an end-point. Many of my clients spend months or years considering an assessment, but they haven’t given much thought beyond the assessment itself. This is completely understandable and is partly a protective mechanism in case they don’t receive an autism diagnosis. But the assessment is only one point in a process that’s ongoing, sometimes for years. Much as it would be lovely for that initial feeling of relief and sometimes euphoria to be consistently carried through, it’s much more likely it will come and go. There will be good and bad days, which are all part of coming to terms with something significant.
2. Withdrawing can be part of healing
Many of my clients feel concerned that their life is contracting and feeling smaller after a diagnosis. They pull back from family events they would previously have attended. They take some time off work. They spend more time in bed than they used to. They worry that this is how their lives will be from now on, and wonder whether their quality of life has been adversely affected since the diagnosis. If you feel you’re withdrawing, think of this as part of the healing process. You’ve probably been pushing yourself well beyond your comfort zone for most of your life. It takes a toll—sometimes a massive toll. Taking some time to step back, do less, rest more is part of recovering and healing. But how you are now—in the first weeks or months after a diagnosis—isn’t a permanent state. It’s simply a healing phase of the process.
3. Don’t push yourself to unmask
Camouflaging, or masking, is primarily associated with autistic women who often go to great lengths to hide their autistic traits in ways that range from hiding extreme levels of discomfort in social situations to pushing themselves in ways that lead to exhaustion and mental health issues. Once they receive a diagnosis, many autistic adults want to begin the process of unmasking and being more open about their autistic experience with others. Whilst this is a great long-term goal, “unmasking” is a process that’s unique to you, and it takes a while to work out what it looks like for you. Some of my clients feel they need to suddenly act in a more authentic way, that they “shouldn’t” be hiding their discomfort in situations, that they “should” suddenly stop saying yes to more stressful social situations. This can bring a whole new level of pressure and stress, which can affect the healing process. Take some time to experiment with one or two things that feel safe to change. Reflect back on these and, over time, consider whether there are other things you might want to do in a different way.
4. It’s OK to feel bad
We all prefer feeling happier, more content, and more confident than feeling sad, anxious or unsure, but after a diagnosis it’s perfectly normal to experience a whole lot of difficult emotions. You’ve been through a lot, which means there’s a lot to process, and not all of that processing is going to feel comfortable or easy. It’s OK to feel bad and to have difficult days as you process this information. Accepting more difficult feelings as a natural part of the process helps avoid getting caught up further in those feelings. If you’re finding things particularly hard, it’s worthwhile seeking out counselling or coaching to help you process things fully.
5. How you feel now will change
I’ve been working with autistic clients, mainly adult autistic women, for many years and many of them stay in touch long after a diagnosis. Whatever their experience, they share one thing in common. How they felt in those first few months is completely different a few years later. This is something I strongly identify with. In the first year or so, I experienced that need to pull back socially and whilst it gave me space, I did worry that I’d lost something. Now, several years down the line, I take on things socially—if I want to do them—that I would never have been able to cope with prior to my diagnosis. Far from contracting, my world has opened up. Taking that time for healing and recovery was the catalyst for redefining my life, and that has involved saying yes to things that previously would have felt unattainable.
No matter how disconcerting the post-autism diagnostic period might feel, learning to approach yourself with self-compassion and patience will help you let the process unfold in a unique, unpressured way.
