Am I Autistic? A Guide to Diagnosis for Adults - Autism Awareness
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Am I Autistic? A Guide to Diagnosis for Adults

With the availability of  information about autism spectrum disorders (ASD) on the internet and other media sources, some adults may start to question whether they have ASD. The path to self-discovery may start when your child is diagnosed (this happened to my friend, Judy Endow), someone in your life may point out that you have some ASD traits, or you take an online ASD test which says you are likely autistic.

It’s not uncommon to receive a diagnosis in adulthood. Not as much was known about autism over 30 years ago, diagnostic testing has changed, and we are still struggling today with identifying women. Because ASD 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 expressing emotions, socializing, maintaining relationships, or on-going mental health issues such as anxiety or depression.

A New Understanding Of ASD

After reading and researching ASD and feeling certain this information describes yourself, you may experience an identity shift towards one that is autistic. Reflecting back on moments in your life, you may view things that happened in a different context, through the lens of autism. Retelling the story of your life may now have the ASD perspective. Remembering your stories, reflecting on them, and receiving feedback will change your narrative. This process of self-discovery helps to make sense of what’s happened in your life – how having ASD has shaped the way you think, react and feel. Maybe some of the confusion is gone, you understand yourself better, and in time you can share this discovery with people you trust.

This new identity may also cause feelings of loss, resentment or anger. It’s OK to feel this way as this is a life changing event and it can feel overwhelming. Try to think about the positive things such as your strengths. People continue to grow, change and adapt throughout their lifespan. You can learn new skills and find new ways to do things that may make life easier and more comfortable.

Do I Need An Autism Diagnosis?

Some adults may question whether they need a diagnosis later in life. Some people self-identify as autistic without receiving an official diagnosis. It’s a personal decision. What can be helpful in receiving the label is access to supports and services that may not be available without a diagnosis, i.e. an income support program that provides additional income if mental health issues prevent being able to work full time. Maybe you need a job coach, a support person to look in on you a couple of times a week, specialized mental health services, or supports in the workplace. A diagnosis can also provide peace of mind and validation that indeed, you do have ASD.

Self-diagnosis in the adult autism community is widely accepted. You can join a support group or get together with other ASD adults without a formal diagnosis. Pursuing a diagnosis can be expensive as most health plans won’t cover the cost and it can be difficult to find a professional who is adept at providing an adult diagnosis.

Buy the Autism Spectrum Disorder in Adulthood E-Book

Assessment for Autism Diagnosis

A formal diagnosis is done by a psychologist, psychiatrist, or neuropsychologist who does adult ASD assessments. A good place to start to find such a person is through your local autism society or by contacting the governing body for that profession. Most have a college or association and they may be able to provide you with some names of people in your area. You can also ask around, maybe through members of a support group. How did they get their diagnosis – who did it? If there is a local university or medical teaching hospital, there may be a psychology department you can be referred to.

If a formal assessment is too expensive, contact the local autism society or services organization to see if they have someone on staff or a consulting psychologist. Some universities, hospitals or clinical centers offer assessments by supervised graduate students who need practical experience in diagnosing. If you are in on-going therapy for other issues, a therapist may suggest the possibility of ASD and be willing to give a diagnosis.

Keep in mind that there is no standardized screening tool tailored to adults that is universally endorsed. Some of the autism tests specifically designed for adults are: ADOS 2 Module 4, ADI-R, 3Di Adult, OCI-R, AFQ, SRS 2, RAADS-14, AdAS Spectrum.

What to Do Next After Receiving an Adult Autism Diagnosis

I have written about what to do after receiving an adult diagnosis so please consult this article for guidance. There is also the decision on who should be told about the diagnosis. I’ve written an in-depth blog about that.

If you want to be in a support group, contact your local autism society to see what they offer for adults. There are also on-line support options available. Here is a list of the groups on Facebook.

Here is a list of ASD resources and articles specific to women:

Autistic Women & Nonbinary Network (AWN) 

Musings of an Aspie

Scottish Autism Online Support Programme for Autistic Women and Girls

Article  – Asperger and Autism Spectrum: Women and Girls

Article – The Dilemma for Women Diagnosis

The path to adult diagnosis is not an easy one and can have many challenges. Awareness and information around receiving an adult ASD diagnosis is improving, though. There are ways to connect with others and find support. Reach out and explore the many resources that are listed in this post. Read the insights of other adults on the spectrum. You will find that you are not alone.

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  1. Jean says:

    Could I please get some information on where I can get an adult autism diagnosis in florida please

  2. Ellie! says:

    I’m not an adult, but a teenager, and I am quite confident that I may have autism. I really would like to be sure of that so pursuing a diagnosis seems like a good idea. How would you go about that in OR?

  3. Melissa says:

    Can you please provide reccommendations for a provider in New Mexico that can diagnose a 19 year old male?

  4. Kim E says:

    My 20 year old son is most certainly on the spectrum. I need him to be formally diagnosed so he can get disability. How is this possible when he refuses to get help? I’m a struggling single mom and he lives with me. It’s so hard. I do my best with him but it’s so much.

    • Dear Kim,

      If you are not his legal guardian, then you can’t tell him he has to seek a diagnosis. If you are supporting him and he is living at home with you, perhaps you could have some kind of a talk saying you are willing to continue to support him but that you are worried that he will need additional support beyond yourself should something happen to you. You want him to be well and so as well as he can, so you would like to do the right things to make that happen. Receiving a diagnosis is a life changing event for people, therefore you have to go at this slowly and probably talk about this many times. You may want to have some literature around on the topic such as Cynthia Kim’s book – https://autismawarenesscentre.com/shop/assessment/think-might-autistic-guide-autism-spectrum-disorder-diagnosis-self-discovery-adults/

  5. Ray says:

    I live in Kansas City, MO and have no idea where to get tested or diagnosed.

  6. Beck says:

    Are there any resources for testing in South Carolina? I’m 18, and I really believe I’ve gone undiagnosed until now, I’ve done a lot of research and reading about other autistic people’s stories really solidified my belief ‘ cause I can relate so deeply. But no one believes me or hears me out, and when I brought it up to my Dr she wouldn’t listen either, and I don’t know if there’s any other options

  7. Hallie says:

    27 years old, DFW area in Texas. Going through a process with my PCP, but it looks doubtful that they’ll give me an ASD diagnosis… all of the tests that were done are relating to anxiety, ADHD, eating disorders, etc. Would love to know where I can go directly for some potential answers.

  8. Michelle Hollis says:

    Hi, thank you for your article. I would love information on how to get diagnosed. I’ve always struggle with certain things through life. My son got diagnosed and I certainly see things similar in me. Probably being now I’m in my late 40’s. So not sure if it would help at this stage. I live in UK Wales.

  9. Roan Dooley says:

    Could I get some resources on getting a diagnosis? I’m 19 and live in Indiana.

  10. Adriana Tello says:

    hi.
    Please can you help me with resources to get an official diagnosis for a boy of 28 years old in new yor city? They are a low income family and his mother just died of covid. please any info its apprecited. thanks

  11. Chase says:

    I have been thinking about getting tested, bit don’t even know where to start looking. I never thought much about it until my partner, who was dating someone before me who was autistic, asked me if I was, pointing out some things. And I always put it up to BPD or Depression. Bit I’m in California looking for answers.

  12. L Ramos says:

    I live in Massachusetts and I am quite positive that I have ADHD and ASD. I’m 37 and have been struggling through every aspect of my life for as long as I can remember. Where do I even start to get some help? I made an appt to see my GP but that appointment is not until June 29th due to Covid. Is there anywhere else I can turn for help?

  13. Jessika says:

    I’m looking to be  diagnosed, and I live in NC. Thank you for your help!

  14. Jay says:

    I’m a 27 year old person in Ohio. Are there resources for testing here?

  15. Leslie Young says:

    My son’s pediatrician noticed possible signs at age 4. He was also tested at age 15. Both times a negative result. Now he is 30 years old (living at home, unemployed and no education beyond HS, with many traits of ASD). I know there are probably local resources for us but the biggest hurdle is getting him and my husband to accept that this is still an issue we need to deal with.

    • You don’t need a diagnosis as an adult to access support groups and services that most autism societies offer. You may want to contact your local one and ask how you can come up with a plan to help your son move forward in his life. At some point, he will not be able to live with you as you age and maybe require care yourself.

  16. Carrie Armstrong says:

    I am DESPERATE to be diagnosed. I have always known. I have tried to get help on my own and it has always ended very badly. My sister has Classic ASD although she is considered high functioning she has the mentality of a 5 year old. My family thinks I am just jealous of my sister and that I am a flake for not having friends or being able to hold a job. They say I squandered my life. Right now my parents help me out but they are old. What happens when they pass and I cant take care of and support muself but am expected to take care of my sister? I am in Huntington WV. I NEED to be diagnosed so that I can recieve ANY help out there avaialable so that I can become independent and be able to care for my sister when the time comes. Any suggestions on where to get help is appreciated . 304-963-0578

  17. Ray says:

    Any recommendations for where to get tested as a 25 year old in Minneapolis? Thanks.

  18. Amanda says:

    Does anyone know of any dr.s in GA that would do an assessment on a 27 year old woman?

  19. Jay G says:

    Thank you so much for this. I’ve been misdiagnosed for almost 30 years. I’m 46 now and when I first read and researched ASD in adults all the sirens and bells starting going off. It all sounded like they were describing me. I broke down crying tears of joy to think that this might be one of the answers I’ve been looking for my entire life. I’m in SD now but having a hard time finding testing locally. I don’t know where to start and which are credible or not. Any suggestions of where to start? I have a Psychiatrist and she agreed with the testing, but I don’t know where to go.

  20. Thank you for this. I have joined support groups as a self-diagnosed ABA therapist. I’m in a hard place as you see what I am feeling and what my job is. I am based in New Jersey and can’t seem to find a therapist who is skilled in evaluations. I have taken all the screenings I can that are offered online as well as RAADS and AQ. I believe I have gone undiagnosed. In schools I’ve had learning disabilities and I catch myself stimming a lot on music and feeling physically different if I walk a different path or someone moves an item in my room. It’s hard differentiating between my anxiety and OCD or if its undiagnosed ASD. I alos suffer from blackout angers and I have a feeling they may be autism meltdowns not IED.

  21. Patti says:

    I feel like my grandson was misdiagnosed as a child, given Adderal which made him sick and hallucinate, and actually has autism. Trying to get him diagnosed now at age 24. I’ve been researching about this, and feel we need more help in this area for adults who know something is wrong and are misdiagnosed. Thank you for your article!

  22. Jenna says:

    …and I still don’t know how/where to get a diagnosis. Gotta love those misleading titles

    • Jenna, if you read the article, there is a section of it that says “Assessments”. Below that is how you go about getting a diagnosis –

      Assessment for Autism Diagnosis

      A formal diagnosis is done by a psychologist, psychiatrist, or neuropsychologist who does adult ASD assessments. A good place to start to find such a person is through your local autism society or by contacting the governing body for that profession. Most have a college or association and they may be able to provide you with some names of people in your area. You can also ask around, maybe through members of a support group. How did they get their diagnosis – who did it? If there is a local university or medical teaching hospital, there may be a psychology department you can be referred to.

      If a formal assessment is too expensive, contact the local autism society or services organization to see if they have someone on staff or a consulting psychologist. Some universities, hospitals or clinical centers offer assessments by supervised graduate students who need practical experience in diagnosing. If you are in on-going therapy for other issues, a therapist may suggest the possibility of ASD and be willing to give a diagnosis.

      Keep in mind that there is no standardized screening tool tailored to adults that is universally endorsed. Some of the autism tests specifically designed for adults are: ADOS 2 Module 4, ADI-R, 3Di Adult, OCI-R, AFQ, SRS 2, RAADS-14, AdAS Spectrum.

      Because I have an international audience that reads these blog posts, I can’t provided specific names and organizations who diagnose adults by location. If you let me know what area and country you live it, I can usually pinpoint who does a diagnosis for adults.

  23. Amanda says:

    Thank you for this article! I think my husband is on the spectrum and I’ve been talking to him about getting a diagnosis and this article was helpful understanding how to get a 29 year old diagnosed!

    • I am glad you found this article helpful. There are many adults who are now seeking a diagnosis so your husband is not alone. There is a much greater awareness now around autism.

  24. Bethany Burd says:

    Hi , I live I Pennsylvania my name is Beth
    I’m not sure if I’m autistic beacuse I’m really socially inclined..but I have no friends. I just talk to people about anything. I’m also having a hard time finding a dr near me who can help. I dont want to be turned away . I’m kinda lost. I reached out to Ruth as you said in your other article to do for several other people. She said she cant help out of state. I understand I’m just wondering where to go next. Do you have advice?
    Hope this make sense and doesn’t sound desperate.

  25. Renee says:

    Thanks for this article, it was very helpful. Although I didn’t care for the test very much bc I didn’t understand some of the questions. What does it mean for your memory to be a steel trap? Or what is an “eccentric professor”?

    • Renee, it would be easier if the writers of the test just said what they mean. A steel trap memory is having an excellent memory and you don’t forget things easily. Eccentric professor means a person who is very intelligent but behaves in a strange and unusual way.

  26. Debra says:

    Well, this just summarized my entire life. “Strong academic performance did not necessarily result in gainful employment. There have been problems expressing emotions, socializing, maintaining relationships, or on-going mental health issues such as anxiety or depression.”

  27. Jennifer says:

    I tried that test but it seemed very stereotypical, like the math and professor questions. I’m still looking for a test to help in self diganosis .

  28. TerrieLynne Allan says:

    Maureen Beenie i under stand ! its not straight through! it took several re-routings and fancy footwork to finally get through (*45min it took me)
    i had to stop a re-start once. i can’t imagine if i was worried or rushed. 🤔😥😯
    i need help for my daughter and i am at my wits end also! – covid is a disease killing the world lets not let it kill our spirits though

  29. Linda says:

    Can anyone help please

  30. Beth says:

    Very insightful, thank you

  31. NO No says:

    I clicked on the online ASD test and nothing comes up.

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