If you are reading this page, it’s likely that you’re looking for more information about Asperger’s syndrome, because you suspect you (or a family member) might have it. You’ve googled it, read the symptoms, and identify with them.
At this stage, some people back away quickly. Not everyone wants to be labelled with something as defining as autism; but for the rest of us, identifying with Asperger’s syndrome (and maybe going on to get a formal diagnosis) has been the most positive moment in our lives, and provided a crucial turning point. It has been distressing, for sure, but out of the catharsis has come self-awareness and with it, self-confidence:
Perhaps, like we did, you fear you won’t be taken seriously, because you don’t fit the aspie stereotype: you’re not a socially-awkward 9-year-old boy, and you don’t have a train set. Perhaps your friends and family think your interest in Asperger’s syndrome is just your latest obsession (er… hello?!). Perhaps you’ve already been to the doctor and been told that you’re “just depressed” (when you’re not), or that you can’t have autism because you can make eye contact (not true), or that you can’t have Asperger’s because you’re an adult and/or female (also not true). Sadly, even some members of the medical profession are woefully lacking in up-to-date information about adult autism.
Perhaps you’re worrying that you just want to have Asperger’s syndrome, because it would “excuse” all your “failings”. Perhaps you’re worrying that you’re just “attention seeking”. Perhaps you don’t feel worthy of a diagnosis.
We understand. We’ve been there too.
These are all very real concerns faced by undiagnosed aspies. But we know that just because you don’t currently have a diagnosis of Asperger’s syndrome, doesn’t mean you don’t have Asperger’s syndrome.
Many aspies are content to self-diagnose. They don’t need the piece of paper to prove their autism; they’re confident in their own knowledge that Asperger’s syndrome is what they have, and adjust their lives accordingly. But we’re not all like that. Some us lack that confidence, which is hardly surprising after a lifetime of “being wrong” about everything else. Some of us need a diagnosis, to prove to ourselves or to others, that “there really is something else”.
All the same, getting a diagnosis as an adult is not always easy, particularly if you are a woman, and you need to do some research before you start. Here are some tips from those who have been through the process.
Do your homework
Even if you’re afraid that researching the subject will lay you open to accusations of “making yourself more aspie” just to get a diagnosis, it’s important to visit your GP armed with facts. Identifying with symptoms from an aspie perspective will be great for your own confidence, but if you’re going to convince a medic, you need to speak to him in his own language; read the “Triad of Impairments” and pick out those with which you have particular issues. Write down examples. In fact, write down everything, questions and all.
• Visiting your doctor
Depending on your doctor, you might find instant understanding and care, or the complete reverse. Either way, the first question he/she will ask you is, “why do you think you have Asperger’s syndrome?” and if you’ve done your homework, you will have the answer. Take a close friend or family member with you to offer both moral support and add conviction to your concerns. If your doctor agrees to refer you, but still seems unconvinced, don’t let yourself be fobbed off with the wrong referral (e.g. to a general psychiatrist for assessment of depression). If you’re in the UK, you can insist on seeing someone with specific knowledge of adult Asperger’s syndrome.
• Prepare for a long wait
Unless you have the luxury of going private (which is an option), you might wait for six months to a year before getting your assessment. This can be a worrying wait, particularly if anxiety is an issue for you. Try not to spend the intervening time thinking too much about it – trying to second-guess the result will only work you into a knot of self-doubt. Keep faith in your conviction. Trust that you know yourself better than anyone else knows you.
• Dont’ be afraid to ask what will happen on the day
You might be pragmatic about your assessment, or feel as though your whole life hangs in the balance. If you’re like us, and prefer to know what your future holds, don’t be afraid to ask about the process in advance. What the room will be like? Who will be present? How long will the consultation last? Where can you go if you need a break? What kind of questions can you expect? Don’t worry about influencing the outcome by having prior knowledge of questions; for what it’s worth, my psychologist had worked out I was aspie before she’d asked the first question.
• Take someone with you
On the day, take a close friend or family member with you. Someone who can confirm (both to the psychologist at the time, and to you afterwards) that you represented yourself accurately. This way, you won’t worry later that you were “putting it on for effect” and/or fear that, despite your shiny new diagnosis, you’re really just a fraud. You’re not.
• Allow yourself to grieve
Whatever the outcome of your assessment, you might well be upset. Even if you get a much hoped-for diagnosis, finally being denied any chance of ever being normal can be distressing. You might grieve for the person you could have been without autism, or for the person you could have been if you’d been diagnosed as a child. Read about the “Loss Curve” and prepare for shock, denial, anger, and depression, before you finally reach acceptance. You might whizz through these emotions in a matter of hours or days, or it might take months. Even though my diagnosis came as a huge relief, it took me a fortnight to stop crying, and about six months to accept it. Over two years on, I’m still making adjustments.
• Have some answers ready
When you start telling people about your Asperger’s, you will get a whole range of responses – many of which might cast doubt on your diagnosis. There’s a list here of what people said to me, along with my (weary-sounding) replies. Use mine, or think up your own answers, but remember that others will be shocked, embarrassed, incredulous, etc. and say all kinds of crazy things they wouldn’t say if they had more time to think about it. You might consider telling some people in writing.
• Be kind to yourself
Don’t go over all the stuff you did wrongly or rightly before you knew you were an aspie. You’ll have done the best you could, and all without a vital piece of self-knowledge. Forgive your old self. Get to know your new self. You are a good and wonderful person, and there’s a whole world of aspies out here waiting to say Hi!