Adults with Aspergers – Getting a late Diagnosis

More and more adults are being diagnosed with autism spectrum disorder (ASD) in their thirties, forties and beyond. Not surprisingly, one of the most common ways that adults realize they are on the spectrum is in the wake of having a child diagnosed with ASD.

Some parents start out researching autism as an explanation for their child’s struggles and realize that an ASD diagnosis would explain a lot about their own life, too. The first clue for others is when a professional who works with their child mentions that autism can run in families. Regardless of how it happens, there is often a sense of disbelief at that initial Aha! moment.

I remember the exact moment I first thought I might have Asperger’s Syndrome. I was listening to an NPR story about David Finch, the author of The Journal of Best Practices. Finch described an online quiz that his wife asked him to take because she recognized so many Aspie traits in him.

As he and his wife described the quiz questions, for the first time I realized that Asperger’s Syndrome (AS) is more than social awkwardness and that I’m more than painfully shy. The symptoms that stood out most for me were the ones I’d never known were “symptoms” of anything other than my personality: attachment to routine, resistance to change, special interests, a need to be alone. I found myself nodding along with the program, shocked at how much I had in common with Finch, and yet not quite believing I could have gone four decades without realizing something so critical about myself.

The first thing I did was search for a screening quiz like the one described in the radio program. I took the AQ and the Aspie Quiz, certain that one of them would prove me wrong, even as I repeatedly scored in the high range for AS traits on each.

I sat there at my desk for long minutes. Could it be possible that I’ve been autistic all my life and not known it? I’ve always known that I’m different. I’ve been labeled shy, weird, introverted, geeky. But what if I wasn’t just weird? What if this thing called Asperger’s Syndrome explained everything about me that was different?

That was an exciting thought. If it was true, it gave me a whole new way of thinking about my life. But the excitement soon wore off and I was faced with what to do with this realization. It turns out there aren’t many resources for adults with ASD, especially those who aren’t formally diagnosed.

Is a Diagnosis Necessary?

A diagnosis opens the door to services at school and home for children, but what about for adults? If you’ve made it into mid-life without a diagnosis, you may find yourself wondering if getting diagnosed really matters. I went back and forth for months on the question of whether to seek a professional diagnosis. Eventually I decided to pursue a diagnosis, primarily for peace of mind. I needed to know that I wasn’t imagining everything.

There are many reasons you may choose to pursue a diagnosis as an adult: to access services, to request accommodations at work or school, or to increase the likelihood that therapy or counseling takes your ASD traits into account. Whatever your reason, it’s important to be aware that the diagnostic process is more challenging for adults than for children.

Many adults run into difficulties with access. There are still few professionals qualified to diagnose adults. The process is often expensive and not covered by health insurance. Misdiagnosis is common. And some adults choose not to seek a formal diagnosis out of concern that it may lead to stigma or bias, or create practical limitations like not being able to join the military or having parental rights questioned.

The Self-discovery Process

Obviously, this is a decision that you’ll want to give a lot of thought. As you do, it can be helpful to spend time on self-discovery, testing out your suspicion that you’re on the spectrum through research and introspection.

Self-discovery can include:

  • Learning more about ASD in adults: If you have a child with ASD, you’re familiar with ASD traits. While the diagnostic criteria are the same for all ages, autism looks different in adults than it does in children. As we age, we develop a range of coping mechanisms that can mask typical symptoms, making them harder to identify. There can also be gender-related differences. Good sources of information about adult ASD include books like Tony Attwood’s “The Complete Guide to Asperger’s Syndrome” and blogs by autistic adults.
  • Assessing ASD traits in yourself: Based on your reading and research, make a list of traits you see in yourself. Talk with one or more trusted persons in your life about your self-assessment. Share a list of ASD traits (female ASD traits) with them. Do they see the same traits that you perceive? Do they see traits you haven’t considered?
  • Looking back at childhood: If you have access to childhood records (baby book, report cards, etc.) or home movies, it can be helpful to look for typical early signs of ASD. If possible, you can also ask your parents or caregivers about specific behaviors. Often, an adult diagnosis will involve answering questions about your childhood, so any information you can gather before an assessment will be helpful.

By the time you’ve completed your research, you should have a good idea of whether ASD is a good fit for you. Many adults are content with this and choose to self-identify as aspie or autistic based on their self-discovery process. Others feel the need–or have a specific reason–to seek out a professional diagnosis.

Seeking an Adult ASD Assessment

If you decide to pursue a professional diagnosis, it’s important to find a psychologist, psychiatrist or neuropsychologist experienced in diagnosing adults with ASD. If your child has received a diagnosis, his or her clinician may be able to refer you to someone who does adult assessments. Other options for finding providers who do adult evaluations include: online resources like the Pathfinders for Autism website; recommendations from other autistic adults; parents of autistic children; teaching/research university hospitals; and local nonprofit autism service organizations.

Whatever path you take to find someone who can evaluate you- know that it won’t likely be a direct route. It’s okay to feel like the biggest first step you can manage right now is to make a list of providers to contact. It may take weeks or months to start making those calls and yet more months to commit to meeting with a professional or scheduling an evaluation, especially if you are simultaneously dealing with the demands of being your autistic child’s advocate.

Ultimately, most adults find that an autism diagnosis is a positive thing. It provides an explanation for why we’ve always felt different and is the first step in assembling a toolbox filled with new coping skills and adaptations.


Cynthia Kim is the author of  I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults. She blogs about her experiences as an adult with late-diagnosed ASD at Musings of an Aspie.


Mark Blakey

Mark Blakey is the founder of the Aspergers Test Site, after a successful career working in IT Mark wanted to share what he learned from his own diagnosis. He is the author of "Emotional Mastery for Adults with Aspergers" and "An Introduction to Aspergers Syndrome". Having received lots of questions from parents with autistic children, Mark went on to found Autism Parenting Magazine. The magazine has become an essential resource aimed at improving the quality of life for families effected by Autism. Its a monthly publication containing lots of helpful articles to help develop social skills, manage challenging behavior and improve communication.

  • M.H.Deal says:

    In light of the English singer Susan Boyle’s announcement of her relief at being diagnosed on the autism spectrum, it would be interesting to have an article on her condition.

  • Peter Kennedy says:

    I feel great comfort in knowing I have Asperges.
    My late grand father was a mathematician and university lecturer. Socially we saw him not so often but maybe most things where planned around his interests.

    I have a high abstract intelligence patterns, I studied body language and I do less eye contact especially intellectualising information. I am not so organised and its not routine rather when something disrupts a task or pattern in my work.

    I did another test two high traits hunter and aspie talented. So my advice research social skills.

  • Haydn R M Charlesworth says:

    Thank you so much for your website. I want to add my voice of appreciation to the others as your site started my own quest for a diagnosis at the age of 63! My ex fiancé admitted to memories of some of my AS traits when I told her I had been diagnosed. Ironically her work as a councillor involves supportive work for resources for children with ASD’s! It just goes to show how ‘invisible’ the condition is and what problems it might cause as a consequence.
    It was a great relief to myself to be given a diagnosis, though in my own experience as it is so difficult for ‘normal’ people to understand the behaviours involved that they continue to misconstrue the intentions of my behaviour. As a result I still tend to feel very much misunderstood and isolated, though I can at least now point out that I have a very good reason for the difficulties I do have with other people. Please keep up the good work it is very valuable.

    • Chris says:

      I am 63. My adult daughter suggested to me that I may have ASD and that she believes she has it, and that she thinks that her father and siblings have it. I haven’t found any information at all on the internet about finding a professional with expertise in diagnosing ASD in adults. I am in the US.

  • julie says:

    There’s another reason why a late diagnosis could be needed. It’s increasingly emerging that many of us have an underlying mitochondrial disorder. And certainly many Aspies have digestive issues and food intolerances, for whatever reason. The effects of all these disorders can seriously catch up with you later in life (in my case, late forties. I’m now 55)

    Personally, I’ve been through two years of being told that my current severe physical health issues were “all in my head” because they made no sense to the consultants who saw me. Consequently, i was assessed as “fit for work” and had my benefits stopped. Without considerable help from my family, I would have wound up on the street (and almost did). Sadly, I was not remotely fit for work, and probably never shall be again. Currenly, this is recognised by the DWP, but my position is still very insecure , of course; as I don’t have any clear diagnosis of anything

    (I am now in the “very long queue” for assessment for Mitochondrial disorders; but I had the dfficult task of answering the question “What does it matter?” from my neurologist, to get into that queue at all. For an Aspie who’s done her research, that question is mind-boggling. There are a hundred obvious, highly rational reasons why it might well matter…and your consultant is surely cognisant of most of them, given that they know enough about these disorders to agree that it’s a strong possibility. So, what the heck do they need to hear? Of course, we are up against NHS funding issues here, and the general feeling that adults don’t matter. As for my seizures: well, epilepsy was “ruled out” by the same neurologist who told me that my symptoms were “all my head”, and that “epilepsy ruled out” is repeated mindlessly, as a fact, by every consultant since then – despite that they actually do accept that there’s something genuinely wrong. All the anti-seizure medicatuions made me so ill that I wound up refusing further drug therapy, so I can see this going back to being “all in my head” before very long… though that drug-intolerance, too, could be explained by a Mitocghondrial disorder; and so could the seizures.

    You can probably well imagine how deeply distressing it is for an Aspie to be accused of fabrication, and/or hypochondria. I had , of course, carefully understated my symptoms, rather than exaggerate.

    All this time, it’s been in the back of my mind that if only I had a clear, unequivocal diagnosis of Asperger’s then I might have a bit of solid ground to stand on, as regards these further diagnoses. But I’ve ben trying for 15 years on-and-off to get that much. Please don’t imagine that it’s anywhere as simple as the NHS website makes it sound. i’ve followed their advice to the letter, but the NHS net is so full of holes, that you’re all-too-likly to fall through those holes.

    My GP fully agrees with my self-dignosis, which would seem to be an excellent start. But she can’t refer me to any specialist Centre for diagnosing adults, because they either don’t accept referrals from outside their county, or else require a “tertiary referral”. When I actually got a referral from my neurologist (that counts as “tertiary” Yippee) it was channelled through a local health service which “don’t do referrals fo Asperger’s anymore” , so they sad. They said to call them back if I once more become suicidally depressed (which I predict will occur next time I have my benefits stopped. And I shall still maintain that it’s less of a “health issue” than a sane reaction to impossible cicumstance. And no, I won’t see any use in more of those damned psychogenic drugs ).

    Yes there’s a reason why I’m insisting on a specialist centre for adults. There’s another long, woeful backstory there. But I’m trying to cut this short.

    And there’s a reason why I’m still pursuing an NHS diagnosis, rather than going private. Two reasons, indeed. One: lack of money, of course.Two: you can be sure that an NHS diagnosis will be taken seriously by the powers that be. That doesn’t always apply to a private diagnosis.

    I know damned well that I’m an Aspie. I don’t need a professional to tell me that. I just need to be able to prove it, that’s all, before the next lot of sh** hits the fan :(. But I’ve just about given up on that.

    My advice is: if you do have the opportunity to get a proper Dx, grab it. You don’t want to be telling a similar story , a few more years down the line.

  • julie says:

    Note to moderator:
    I meant to say “Please don’t imagine that it’s anywhere as simple as the NAS (National Autistic Society) website makes it sound” (paragraph 5) Could you amend that please?
    Everywhere else , where I’ve used the term NHS, I actually did mean NHS. Just that one sentence needs amending. And it might be worth expanding the acronym in full (just exactly as I did above), cos we Aspies are not good at acronyms, as i just proved *chuckle* .
    Thanks 🙂

  • R.S.S. says:

    I first began reading at 2 years of age, and learned to multiply at 8. My mother explained that 2 X 2 meant 2+2, and that 3 X 2 meant 2+2+2. I took it from there, soon learning to multiply 2 and 3 digit numbers in my head. I always scored within the top 2 percent on standardized tests (especially in math and grammar). I won 2 district-wide spelling bees. While this was going on, I always read very rapidly, and spoke rapidly. I would often speak excessively and go off point, until others thought that I was a bit strange. I also had difficulty distinguishing between literal and figurative (e.g., slang). I was (and still am) very physically unbalanced (stumbling and fumbling). Don’t even get me STARTED on my teen years (puberty, etc.). I would often have outbursts because of all of the stored-up frustration. My parents saw anxiety taking form. As I got older, I began to experience OCD issues (checking light switches and door locks multiple times before leaving, making certain that objects were set a certain way, etc.). My primary physician (who diagnosed me with generalized anxiety disorder in 2009) and psychiatrist recognized these traits. Finally, about 3 years ago, 2 of my family members (both with masters degrees in psychology) asked me to look at am article about Aspergers Syndrome. Many of the traits mentioned in the article mirrored what I experienced from age 5 to the present day. I am now working with a psychiatrist and a professional therapist who specializes in adult Aspergers. The road has been long and difficult, but, finally, after 40 years (I am now 45 years of age), the center of my prolonged difficulty is being addressed.

  • Peter Ryland says:

    Are you in the US or UK? Please can everyone who posts say where they are.
    I am in the UK and aged 62 I did the test on this site and got a score of 37. At age 64 I asked my GP for a referral for NHS tests and am still waiting after 6 months.
    In the UK we pay high taxes for a universal health system, but it is underfunded and undermined since Tony Blair and 2x Tory governments have sought to “outsource” to the private sector, creating an over beurocratic, and profit led backdrop to our esteemed NHS, haemorrhaging money into the coffers of increasingly multi national corporations.
    Therefore I rely on the NHS and refuse to “go private” as it feels like giving in to Big Business.

    • Karen says:

      I’ve known I’ve been different since 4yrs old.
      I’ve never fitted in. I’ve always preferred my own company, but believe I’ve probably learnt it’s easier to be in my own company.
      I’ve done a couple of online tests, and come out high on both the tests. It’s been a bombshell, but at the same time, not surprising..
      I’m 50.ive lived all this time thinking I am at odds with the world, and maybe I am! But, it’s what to do now..

    • MrsClare.A. says:

      Mental Health is disgustingly underfunded. It’s a 2.5 year waiting list for Autism Diagnosis where I live, it’s heart-breaking to think how many are out there not getting help, just like I didn’t – The age we grew up in there was none, Aspergers wasn’t even a ‘thing’, it was ‘fit in or push off’. Better for the younger ones now thank God, earlier diagnosis & more acceptance. The suffering our generation & those before went through MUST end – Apparently they reckon Marilyn Monroe had it; what chance had she back then?! Poor lass. Guess Einstein fared better..

  • Dawn Thompson says:

    Being misdiagnosed myself I couldn’t get the right help. I ended up in a partial hospitalization program that focused on Mindfulness. The counselor there told me of an advanced program they had called DBT, dialectical behavior training, forms of this are popping up but not everyone knows about it yet. There’s: DBT, CBT cognitive and EBT.
    This has given me the ability to help myself and find may way onto a great path to A Life Worth Living.

  • Leo says:

    I’m 60 and I’ve been suspecting AS for many years. I just took the test and scored 38. I’m a US citizen living in Germany and medically insured by AOK Versicherung. I really have no idea how to go about this. My German is good enough for most things I meet in daily experience but not for an involved chat with a Psychologist. I’m so hesitant to move forward on this as I don’t know what to expect from the German health care system.

  • MrsClare.A. says:

    Wow. A lifetime struggling to fit, being blamed by myself & others when my efforts naturally failed, isolated suffering, no help, bullied. For 40 years I constantly battled the resulting depression, low-esteem & anxiety seeing countless Drs, Psychologists, therapists & ignorant midwives- Not ONE even suggested Aspergers. Totally by chance I finally have the truth at 51. Makes sense & really wasn’t my fault, but the grief, the regret.. What would I have been if only I’d known? Less scars on my arms, less drugs, less self-hate & time wasted thinking of death. IF there’d been basic awareness, understanding, instead of pills & doors slammed in my face, feeling suicidal but told there’s a 3 month wait for mental health appointments, underfunded by UK Gov. I would love to do all I can to prevent ANYONE going through what I did, & feeling like this now. Aspergers is technically a gift; the smartest, most creative, honest, loyal, empathetic types – but when it’s undiagnosed it can be a living Hell. Ask Marilyn.

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