Diagnosis: Finding Out About Autism #AtoZChallenge

Welcome to the A to Z Challenge, day four. Today, I have a bit of a personal post for you. I am going to share what it was like for me to get diagnosed with autism. My experience will hopefully empower adults who suspect they are autistic to make the right choice for themselves.

First, I was “self-diagnosed” for several years at around age sixteen. I didn’t like the term “self-diagnosis” at the time, because I didn’t feel a layperson (or even a professional) could diagnose themself with autism or any such condition. I’d rather say that I suspected I was on the spectrum.

My father’s comments both caused me to start suspecting I’m autistic and to stop suspecting it again – at least openly. One day in June of 2002, he came to my room at night yelling whether I was autistic or something (in the tone of voice that parents use to discipline their children). I wasn’t sure what being up late at night playing music, which bothered my father, had to do with autism, but somehow soemthing clicked with me. Maybe I was autistic after all.

A little under two years later, my father read me a newspaper article on fashionable disorders like PDD-NOS, and said he knew I had one of those conditions too: I had an asparagus addiction (bad wordplay on the pronounciation of “Asperger’s”). I decided that day that I wasn’t autistic after all.

Many adults nowadays suspect they are autistic long before they get formally diagnosed. There are many reasons why a person might seek a formal diagnosis, such as:


  • Getting professional confirmation of their suspection.

  • Having less trouble getting accommodations at work or in school (they can prove that they have a disability and are protected by the ADA or similar laws).

  • Getting disability-related services, such as independent living support.

  • Being able to pursue treatment.


There are also many reasons why people might decide not to seek a formal diagnosis and stay self-diagnosed. For example:

  • They may have negative experiences with psychiatrists, psychologists or other healthcare professionals, whom they will need to see in order to get diagnosed.

  • Some people don’t view autism as a disorder, so don’t believe they need to be diagnosed with it by a mental health professional. They just know are autistic.

  • A diagnosis may lead to an increased risk of discrimination, for example for health insurance or in employment situations.

IN late 2006, I myself was pretty much falling apart and hardly able to function in the independence training home I lived at. It wasn’t my decision to get me formally diagnosed, it was the staff’s. In fact, I couldn’t communicate to my GP that I wanted a referral to mental health services. It wasn’t even until the staff said they were wanting me to be assessed for autism that I started believing I might be autistic after all again.

The process of getting diagnosed may vary depending on the person’s age, cognitive ability, etc. In my case, for my first assessment, I had some meetings with a psychiatrist and then my parents were asked to come over to answer questions about my early development. If parents aren’t available, a sibling or other relative who has known the person being assessed for a long time, will be asked to complete this assessment.

Because the paperwork got lost, I had to be reassessed half a year after my initial diagnosis. This assessment consisted of the AQ-test (which stands for either autism quotient or autism questionnaire). This is a fifty-item questionnaire which asks about autism symptoms. I do not feel this questionnaire is worth much, as it can be completed by anyone online and someone who’s suspected they have autism for a while, can easily answer the questions in their favor. I also had to complete a DSM assessment. The DSM is the psychiatrist’s manual with criteria for each disorder. In a DSM assessment for autism, they walk you through the criteria and ask you to explain whether you meet them and if so, why. Lastly, my parents had to complete a developmental assessment again.

For a reason unbeknownst to me, I had to be assessed yet again in 2010, three years after the second assessment. I was this time given the AQ-test again plus the Dewey Story Test and something similar to a DSM assessment. The Dewey Story Test is a test of social awareness. It consists of a number of scenarios about human interaction. The person being assessed has to rate the person’s behavior at certain points in the scenario, with ratings ranging from “normal” to “shocking”. This test, too, at least used to be available online, though I can’t find an English version right now. I scored quite poorly on this test and again scored high on the AQ-test.

Other elements of an autism assessment might include IQ testing, neuropsychological testing or specific observation or interview instruments for diagnosing autism. An example of this is the Autism Diagnostic Observation Schedule (ADOS).

Unfortunately, the paperwork from my second diagnostic assessment, which was the most comprehensive, got lost last year too. Because I am going to get a consultation at the country’s top notch center for autism, I fear I’ll need to be assessed once again. This is because they require a clinical psychologist’s or psychiatrist’s diagnosis and the third assessment was by an educational psychologist. Besides, my parents weren’t asked for a developmental ssessment this time, because firstly they wouldn’t want to come over again and secondly I didn’t want them to. Unfortunately, because I badly do need services and treatment, I have no choice but to get reassessed if that’s what they want.

32 thoughts on “Diagnosis: Finding Out About Autism #AtoZChallenge

  1. We actually had our youngest tested for autism. He has always had a speech delay and a few other issues. Turned out the he just needed OT.

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  2. Wow, just wow! I have never sen someone with autism be able to explain themselves so clearly! The autistic kids I know barely speak, so it’s wonderful that whatever your challenges are that you can describe your situation so clearly! That was so interesting to read! Thank you for sharing.

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  3. It seems crazy that your paperwork keeps getting lost!

    I was wondering if writing was much easier for you? You communicate through the written word so well!

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    1. Yes, as I wrote in my post on communication (the C in the A-Z Challenge), many autistic people find it much easier to write than speak. My speech sounds almost normal usually but I do find it much harder than writing because of the speed of processing required for speech. I for your information have an Asperger’s diagnosis, which basically means I have a normal (or in my case above-normal) IQ and didn’t have a speech delay. Many Asperger’s autistics sitll have problems with spoken communication though.

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  4. I’m also sorry that your paperwork keeps getting lost, and that you have to constantly take agonizing tests. You sound like a very bright girl Astrid, and with your continued patience, you are destined for success.

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  5. Visiting from the A/Z challenge. I do hope that you can get the diagnosis and the services you need and that the paperwork does not go missing again. So frustrating! My now 29 year old daughter was diagnosed with Asperger’s syndrome when she was 15. I knew something was different about her but couldn’t get anyone to listen to me. They tended to want to “blame” some of her behavior on her physical disabilities that she had. Thankfully, within 5 minutes of seeing a new adolescent psychiatrist, she was diagnosed with Asperger’s and it made perfect sense and helped us to relate to her better from that point on. Sadly because she was diagnosed so late she didn’t qualify for many services where we were living at the time. I do hope you do get the help you need.!

    betty

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    1. I’m so sorry that your daughter was diagnosed so late and that she didn’t qualify for many services, but glad you found out what is going on eventually. In the Netherlands, thankfully, most mental health agencies now have an autism team that serves adults too and some agencies have specific adult autism specialists.

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  6. I’m sorry your diagnosis has been such a long road for you. It doesn’t help with paper work getting lost! I have heard that it is harder for girls to get a diagnosis. I hope you get your answers soon x

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  7. My daughter is 3 and we recently had her go threw all of this since she is severally speech delayed. At the moment doctors are going with just a severe speech delay and to continue speech therapy, but we will have to go threw all the testing again in a year if nothing improves… So I feel you on having to go threw all of this stuff again and again…. Can get so tiring :-/

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  8. How great of you to share your experience with autism diagnosis with the world. How frustrating that your paperwork keeps getting lost.

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  9. Thank you for sharing your story. Getting parents aware of Autism through your own experience must of been hard to blog about. I know many parents that go through this and it’s hard on them..

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  10. Thank you so much for sharing your personal story about this. This will surely help other people going through the same.

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  11. What a mess with the consistent lost paperwork. Did you not keep copies of your medical records for yourself? I always do just to alleviate those problems. I hope you can get an official diagnosis and begin your path to treatment. One that will work in your favor.

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  12. What is up with all of your paperwork getting lost…that’s how people fall through the cracks and don’t get the help that they need. I look forward to hearing what happens on your next assessment.

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  13. Thank you so much for sharing your story. I know others who have struggled with autism in many ways, I wish they could have known your story back then. I am sorry they lost your paperwork, I hope all goes well for you when you go back again.

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