The Relief of a Late Autism Diagnosis - Autism Awareness

The Relief of a Late Autism Diagnosis

Receiving a late diagnosis of autism in adulthood can be a relief. For high-functioning individuals, it’s not uncommon to receive a diagnosis later in life. Because autism characteristics are becoming more known to the general population, undiagnosed adults are becoming aware that these characteristics explain their significant life-long experiences and struggles. Strong academic performance did not necessarily result in gainful employment. There have been problems in relationships, expressing emotions, and accusations of being self-centered.

Once a diagnosis happens, it can open many doors such as finding suitable employment, obtaining a higher education, securing a supported living situation outside the parental home, or accessing financial assistance and services.

Although many adults feel relieved about receiving a diagnosis, it also means a whole new way of defining oneself and having to defend the diagnosis. A person may experience feelings of depression, anger, anxiety, grief, or guilt. These are all common and normal reactions. In order to cope, it may be helpful to seek support from post-diagnostic experts such as social workers, counsellors, psychiatric nurses, vocational rehabilitation counsellors or professionals with experience in grieving, loss, and recovery work.

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Carol Ogburn’s post on late autism diagnosis gives solid recommendations on how to seek an adult diagnosis as well as the emotional experiences around a diagnosis. She suggests reading Cynthia Kim’s book I Think I Might Be Autistic. There is also Philip Wylie’s new book Very Late Diagnosis of Asperger Syndrome (Autism Spectrum Disorder) which details the stages of late diagnosis, from self-identification to acceptance. It discusses mental health issues that can arise, supports that are available and strategies for the future.

It may also be helpful to join a support group of other adults with the same diagnosis. Support groups can be found through a local autism society, mental health unit in a hospital, or through a local mental health clinic. If a community does not have a support group, there are also a number of support groups/chat rooms on the Internet such as the OASIS @ MAPP,  GRASP On-Line Support Groups, and The Autistic Self-Advocacy Network.

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  1. Paul Murphy says:

    My wife of 6 years just got a diagnosis after years of being told it was anxiety and depression. I’m both relieved and angry about this. Can you recommend any sites that offer advice or tips on how to assist someone with a late diagnosis 

  2. MaryEtta Schaffler says:

    I believe my husband is on the higher part of the Autism Spectrum. I don’t know how to talk to him about it. He holds a master degree in mathematics, and has trouble spelling and does not care for change etc. Are you able to help us?

  3. Lisa Kimble says:

    I have always felt out of place, not a part of anything. I have struggled for decades. My daughter was diagnosed with Asperger’s at age 16 (now 27); her clinician at the time told me I should also get an evaluation. I never did, because I thought it was “too late” – I already faked my way through social situations (including work) by mimicking those around me. I wish I had been evaluated as I am now on FMLA (Family Medical Leave Act). I have an evaluation scheduled, but it isn’t for another 6 weeks. I have been researching and reading everything I can, and it all makes sense to me. I am different, always have been. I am tired of being diagnosed with anxiety and depression, and doctors prescribing pills to “fix” me. I don’t need to be fixed. I need to be understood. I look forward to my evaluation so I can get an “official” diagnosis and move on to better things. I am in my early 50’s.

  4. Chris Jackson says:

    I have felt oddly out of step with world as far back as I can remember and still do. I have been dx with depression, anxiety and even chronic fatigue syndrome. I have used 8 different types of AD’s (plus Lithium), about 10 counsellors, 5 psychologists and 3 psychiatrists. Plus, I’ve tried acupuncture and mindfulness. The AD’s have minimal to no therapeutic effect and the therapy works to a point, despite 2 decades of it. Because of how I feel in the world and how it’s been a daily struggle I thought about high functioning autism. I did Simon Baron Cohen’s little test (non-diagnostic) and scored 46 out of 50. However, I put most of it down to adaptations to my difficult home life (mother as Narcissistic Personality Disorder). Now I’m not sure what to think. Interesting to read above about people having a strong academic background and yet having difficulty gaining employment that reflects this. I have a degree in podiatry plus post grad stuff in biomechanics, but struggled to progress within my workplace. Currently confused, but will investigate further.

  5. Lisa Zang says:

    It is positive, yet it is so much at once. My 13 year old son maybe autistic, but the school says he already qualifies due to his anxiety, so testing isn’t necessary. Knowing how much makes sense for me now, this doesn’t seem correct. I really appreciate this website, it is very positive & helpful.

  6. Lisa Zang says:

    I turned 53 in October. Two days later I was assessed as autistic; the expense my birthday present to myself. Talk about “Aha!” moments. I’m busy trying to learn more, in therapy.

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