Discovering Autism as an Adult

Many of the women questioned had received their diagnosis of autism after their teenage years, some not until much later. Some of these women had spent the vast majority of their lives not knowing that they were on the autism spectrum, and having no self-awareness and no support. They grew up in a time when only children (and only male ones at that) had autism; they had to find their own way, often experiencing major crises and challenges along the way. As they were in this unique position of having experience of life both with and without diagnosis, and also with the benefit of age, I was interested to know how they felt about being autistic and being diagnosed, whether they wished that they didn’t have it (if that was something they could even imagine) and whether they would have liked to have been diagnosed earlier. Their perceptions can give us insight into how girls with autism may feel in later life and help us to develop appropriate approaches to maximise the positive and minimise the negative elements of these older women’s journeys. Rudy Simone asks whether Asperger Syndrome is a disability or a gift and concludes that:

[If] you remove the autism, you remove the gifts. (Simone 2010, p.212)

She also reports on the paradox of the variable profile of challenges and abilities with an insider’s insight that I think many women with autism will recognise.

We can read books and understand anything written better than most, but can’t follow social conversation. We can dismantle computers and install hardware, but can’t find our way around a supermarket. We can monologue for hours on our special interests, but can’t spend an hour in conversation without getting a migraine or having a meltdown. We can paint pictures and design things of astonishing beauty, but can’t be bothered to fix our own hair. (Simone 2010, p.211)

The sense of difference that many women feel, I believe, stems from this uneven profile. It makes it very hard to work out where you belong when you are brilliant at things that others find hard, but useless at things that others find easy. This is why the diagnosis, at any age, can come as such a relief. It explains everything. It makes sense of everything. And women with autism need to make sense of everything.

My head had been spinning all my life with trying to make sense of why these things happened to me, why I was so odd, why I couldn’t live like other people. The diagnosis stopped my head from spinning. I was able to breathe a sigh of relief and relax. (Woman with autism)

Adult diagnosis – why bother?

One of the most common things I am asked when discussing diagnosis for adults with autism is: ‘What’s the point?’ The presumption is that if you have made it to 40 or 50 years of age without a diagnosis and survived, why bother getting one now? My personal and professional experience paints a different picture, which is almost universal for both men and women. As one woman puts it:

It put many of the difficulties I had with school and friendships into perspective, as well as allowing me to work out why I find some situations very stressful/tiring (e.g., social occasions, meeting new people, loud environments etc). […] In short, it was a massive relief – I know who I am, how I can expect myself to be, that there’s nothing ‘wrong’ with me, and that the friendship difficulties I had weren’t my fault. (Woman with autism, diagnosed aged 21 years)

What difference does diagnosis make?

Women receiving late diagnosis often share the same sense of relief and self-acceptance as men, but perhaps to an even greater degree, due to the way in which they have needed to manage their autism – often through bending to fit what’s expected of them (which men with autism are seen as less prone and/or able to do). Feeling justified or vindicated by diagnosis is the strong response of many of the women I have spoken to: a sense of having the right to be yourself established – for the first time – in a world that doesn’t always welcome or appreciate that self. These are women who are exhausted and angry at having tried so hard to make everything make sense, while presuming that they were to blame for not getting it in the first place; women who feel they have had to put on a persona of social acceptability in order to be tolerated. I often see individuals go through a phase of what I call ‘militant’ autism following diagnosis, where the person decides to behave exactly as they please, almost as a knee-jerk response to rejecting their former existence. For most people, this is part of the post-diagnostic process of coming to terms with what this new information means, and a more moderate position on how to exist more happily is usually found over time. When asked what difference having an adult diagnosis meant for them, common themes are self-acceptance and being kinder to oneself.

I have plans that are based on who I am, rather than who I think I ought to be. I spent my first half century trying to fit in and now I have stopped. If anyone questions my oddness, I tell them it’s because I’m odd. (National Autistic Society 2013a)

A massive difference, mainly in terms of understanding myself and not being so hard on myself. It explained so much of my life, my needs, my choices, and it made me feel justified and validated in being how I am. It makes it easier to meet people and take on new experiences because I know why I find things difficult, I know what might help, and if it doesn’t work I am more accepting. It helps with the guilt – why didn’t I travel the world during my gap year, why aren’t I using my PhD to commute to London to work a 50-hour-a-week job, why don’t I go to parties when I am invited, why do I not enjoy parties I do go to when I have guilted myself into going, etc. (Woman with autism, diagnosed aged 31 years)

[The diagnosis] wasn’t unexpected but the emotions that came afterwards were. I feel I am in a period of ‘mourning’; not sure how I feel about it and what it means. (Woman with autism, recently diagnosed aged 48 years)

Before the diagnosis I’d thought I had no friends because I was unpleasant; then I learned that it was simply difficult for me to communicate in the way that makes people comfortable forming bonds of friendship. Before the diagnosis, when I ‘withdrew’ it had always been attributed to me being ‘moody’ or ‘sulky’, when actually, inside, I often felt calm and happy and was surprised when people were angry. It explained why I had difficulty functioning in a typical way and found day-to-day life such a challenge. (Woman with autism, diagnosed aged 33 years)

For the most part, people reflect my own attitude – it’s not a big deal, it’s just who I am, and for those who knew me before the diagnosis, it’s obvious I’m still the same person. It’s as much a part of me as the colour of my hair or my love of music; it’s just not as visible in the same way. My ex-fiancé’s reaction wasn’t as positive – he expressed a concern that our children would have autism, and accused me of using it as a ‘crutch’ to ‘excuse’ behaviours that he didn’t find acceptable. (Woman with autism, diagnosed aged 21 years)

Do you wish you didn’t have autism?

This is a big question to ask and a hard one to answer (we’re not supposed to be good at imagining what it’s like to be someone else). I was interested to know if the fact of having made it to adulthood – as a person with autism in a neurotypical (NT) governed world – had given them a sense that being one of those NTs would have been preferable. For most – perhaps surprisingly, considering the difficult lives they had often had – this was not the case. Their comments and insights were considered, sometimes militantly proud, sometimes sad, sometimes angry, acknowledging regrets and missed opportunities. Some recognised and were happy with who they were in themselves as people, but frustrated and tired by the negative consequences that they had experienced in their lives at the hands of an NT world that did not understand and accept their way of being.

Yes, it would have been easier through the years. So many situations in life have been difficult to navigate. (Woman with autism)

Sometimes I wish that I didn’t have autism, but mostly because of the anxiety side of things. (Woman with autism)

I wish it was accepted and that I didn’t have such a lonely life. (Woman with autism)

I’d have to know what life was like as an NT to make that decision. I would prefer not to have the sensory issues but the heightened memory and ‘cutting through the bullshit’ aspects of the condition are actually mildly appealing as character traits. I almost wish more people were definitively on the spectrum to make ‘us’ the majority in society. (Woman with autism)

Yes […] and no in some respects. Since receiving the diagnosis I have gained a slightly better appreciation of myself, and pride myself in finding worth in my various personality niggles. I do loathe how difficult it is for me to engage in typical discourse, and also my panic attacks when it comes to confronting the big, wide, human world. It’s those public inhibitions where I want to express myself or get my point across that do bother me at times, but I am glad for what I know about my (though maybe limited to some) interests. (Woman with autism)

Mostly the women felt happy to be autistic and had no desire to be different, despite the challenges they had faced. It must be noted that the type of person who willingly contributes to autism research such as this is more likely to be someone who is aware and knowledgeable about their condition and perhaps is more likely to feel positive about it than someone less educated about it. In my experience of working with young women with autism, this positivity is not always so evident at an earlier age. When younger, the desire to fit in is enormous, as we have heard. Age, and with it self-acceptance, appears to play a big part in feeling OK about your autism. In some of the women, pride in their identity and, dare I say it, contempt for NT values are evident.

No, because then I wouldn’t be me. You don’t take off the autistic part and discover a ‘normal’ person underneath. I am autistic the way you have blue eyes or curly hair. It goes all the way through, like letters in seaside rock. It governs the way I think, listen to my body, the way my body talks back to me, how I see the world, everything. (Woman with autism)

I am glad that I have autism, I find the NTs confusing, like sheep following each other around. They never seem to say what they mean. I try to avoid them. (Woman with autism)

I am proud to be autistic. Do you ever look objectively at NTs? Yes, some are good, but many routinely tell lies, exclude those who are different, subscribe to superficial trends, talk nonsense and are obsessed with conformity. Why would I want to be NT? Ugh. (Woman with autism)

Autism makes me very unique, and in principle I don’t mind being different. I know I am very capable and very intelligent in a unique way. I just wish I had the social skills to be able to do something good with that set of skills. (Woman with autism)

Would you have liked to have been diagnosed earlier?

Current thinking suggests that early diagnosis, and therefore appropriate support and intervention, is in the best interests of individuals with autism. The women questioned had varying responses, with the majority feeling that an earlier diagnosis could have given them access to opportunities that had been denied to them due to an inability to access support; they also felt it could have saved them from a lot of emotional pain and the feeling that there was something very wrong with them. Interestingly, several women said they would have liked to have been diagnosed earlier than they were, but not necessarily in childhood. They felt that a childhood diagnosis may have resulted in limitations placed on them by themselves and also by others in their lives: parents and teachers, who may have tried to protect them.

I would definitely have liked to have been diagnosed earlier. I spent the first 13 years of my life thinking I was nothing but a freak (that mindset still sticks with me today), simply because that’s how the world viewed me. (Woman with autism)

I feel I have sacrificed the gifts from my Aspieness in order to fit in. Maybe if I had been diagnosed earlier I would not have spent a whole life trying to fit in, and would have been able to forgive my own social deficits, thus saving the energy and intellect required to pretend to be normal, which I could have dedicated to things that I really wanted to do, such as research into science and/or languages. (Woman with autism)

It would’ve changed my entire life, in short. It wouldn’t have allowed my chronic depression, which coincided with my not knowing what was ‘wrong’ with me during that crucial time of my life, to overwhelm me or leave me awash with the cycle of perpetual procrastination that it did. It condemned me to an abyss of endless inaction. I still resent those more professional people around me for not spotting the signs sooner. (Woman with autism)

The women who commented that they would not have wanted an earlier diagnosis felt that they were stronger and more capable because of what they had been through. Some of them felt that children diagnosed nowadays are sometimes overprotected and, as a result, are less independent than they were.

Positives would have been maybe getting some help, support and understanding. Negatives would have been having my aspirations downgraded – you can’t manage that, it would be too stressful etc., and seeing yourself as less and defective. (Woman with autism)

[Maybe] but any early intervention/help may ultimately have hindered my development into the adult I’ve become – I believe I’m stronger through having struggled at times and am far more prepared for the nature of adult life than some people who have had support for years. (Woman with autism)

I probably wouldn’t have been nearly so independent and self-reliant as I am today […] When I see so many young people with Asperger’s who seem to be so protected (by their mums especially), I don’t think it’s good for them. I think the parents don’t realise how much their son or daughter could do if they were encouraged more instead of being made to feel they are disabled. (Woman with autism)