Autism Spectrum Disorder (ASD): Barriers and Pathways in Formal and Self-Diagnosis

🚧 Work in Progress 🚧 (aren’t we all?)

About the Author

Hi, I’m Alice. You’re already on my CodeBerg page, and you can find my Mastodon profile here.

I spend my days working for a (non-GPT-based) AI company, managing their data science team. I’ve worked in the game industry for years as the head of data, and I’ve worked in data & business analytics in general for many years. I have a computer science degree and finished a few years of psychology coursework prior to that. When I’m not at work, I queer it up online, rant about capitalism, and advocate for data privacy.

As of writing, I think I’m currently most famous for a gif of a farting cat. Maybe this will change that, but knowing the internet, probably not.

I’m autistic, or at least, I’m very likely autistic. I’ve been trying off-and-on to get a formal diagnosis for a few years now.

When I was quite young, I had some speech difficulties and saw a speech therapist for them. Growing up, friends often joked that I was a robot or alien, due to my social interactions, flat affect, and specific interests. Ah, kids; their comments cut deep. When I was older, I was just a little “off”, “odd”, or “peculiar”. It wasn’t until well into my adult life that the topic of autism came up one night, at a bar with some friends. I took some online quiz on my phone. The quiz was like, “You’re Autistic! Lol”. We started discussing the validity of online quizzes as a few other friends took the same test. All-but-one of them got results of “You’re probably not Autistic”. It got a little awkward, and the conversation changed topics.

Over then next weeks, I took a lot of online tests, and they all pointed the same direction—I was likely autistic.

I didn’t do much of anything with that information for a while, just kept it tucked away in the back of my mind, where it could gnaw at me.

Some months later, after moving to and settling down in the UK, I started looking into getting a formal diagnosis. After searching around and calling places, I eventually found an autism center that was accepting people and got myself on a waiting list. Then COVID got worse, and the clinic paused its services. I looked for another, but no one was offering diagnostic services (especially for adults). I eventually got an email that the clinic was closing permanently and I was no longer wait-listed.

Fast-forward some months, and I’m living back in the USA, getting re-settled in. I ask my new doctor about formal diagnosis options, and he agrees that I’m likely autistic. After a few weeks he gives me a referral to the University of Washington Autism Center. I try for a month or so to get a response from them, and eventually someone contacts me to let me know that they’d be happy to see me if I have a formal diagnosis. After some questions, the lady informs me that they don’t offer adult diagnostic services anymore, but that I’m welcome to get another referral after I get a formal diagnosis.

So there I was, years after starting my journey towards a formal diagnosis, with zero progress towards my goal.

That’s when I started really researching the validity of self-diagnosis, which is what this project is all about.

There are no ads, deals, or sponsors behind this project; it is 100% my own opinions and research.

Notes and To Dos

Update: Dr. Donna Henderson recently reached out via email and gave me a wonderful compliment about this guide. I asked for any advice from her 30+ years of experience in the field on how to improve it, and she was kind enough to send me a few points. So this update is to address her suggestions. I’ve made a few changes to the paper, and added a discussion section at the end to directly address her points.

• Add more resources.
• Add more about what differential diagnosis is.
• Qualify “gold standard” as marketing fluff.
• Review Understanding the Self-identification of Autism in Adults: a Scoping Review 📄

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Self Diagnosis is Valid

With the barriers, expenses, and often long wait-times associated with getting a formal diagnosis of Autism Spectrum Disorder as an adult, I see a lot of people turning to self-diagnosis.

According to A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults 📄

Researchers found that “fear of not being believed by professionals was identified as the most frequently occurring and most severe barrier” to getting a formal diagnosis. A number of other barriers were described in the study, such as cost of services and lack of insurance, where one study participant “described a vicious cycle, in which they were unable to work due to symptoms they believed were related to ASD, and then lacked funds to pursue a diagnosis due to unemployment”. They also found that “many individuals described challenges finding a diagnostician that was willing to diagnose adults.”

This paper covers a lot of potential barriers to formal diagnosis, and also breaks out gender and country of residence differences.

UW Autism Center: Self-Diagnosis-Friendly Resources and Communities 📄

“In our experience at the University of Washington Autism Center, many professionals are not informed about the variety of ways that autism can appear, and often doubt an autistic person’s accurate self-diagnosis. In contrast, inaccurate self-diagnosis of autism appears to be uncommon. We believe that if you have carefully researched the topic and strongly resonate with the experience of the autistic community, you are probably autistic”

Autism Spectrum Disorders and Self-reports: Testing Validity and Reliability Using the NEO-PI-R

“Results support the use of self-reported measures when assessing adults with ASD.”

Note: I’ve requested a copy of the paper from one of the authors, and will add info from it when/if I have access.

Experience of mental health diagnosis and perceived misdiagnosis in autistic, possibly autistic and non-autistic adults 📄

“Results from the confirmed and possibly autistic groups were very similar. The mean AQ score of the possibly autistic group (35.8) was well above the recommended cut-off (32+) for clinically significant level of autistic traits”

“Jones, Goddard, Hill, Henry, and Crane (2014) looked at the experience of those who have received an ASC diagnosis, and found that 44.5% of their respondents reported raising the possibility of ASC themselves, in comparison to whereas only 4.1% reporting that a professional raised the possibility.”

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Self-Diagnosis isn’t Valid?

This section contains any research I came across that points to self-diagnosis not being valid.

Predictive validity of self-report questionnaires in the assessment of autism spectrum disorders in adults 📄

“This study indicated that the predictive validity of the RAADS-R-NL, the AQ-28, and the AQ-10 is not high enough to accurately predict the outcome in adults referred to specialized outpatient departments for ASD assessment. The PPV and NPV suggest that, with these instruments, one in five referrals in outpatient settings score above the cut-off and yet do not have ASD; conversely, almost half of the referrals with a score below cut-off do in fact have ASD.”

This study refers to the accuracy of specific tools (RAADS-R-NL, the AQ-28, and the AQ-10).

However, here’s some research 📄 that specifically concludes that “The Ritvo Autism Asperger Diagnostic Scale, Revised (RAADS-R) is a valid and reliable instrument to assist the diagnosis of adults with Autism Spectrum Disorders (ASD)”.

Autism Self-Diagnosis: Can You Self-Diagnose Autism Spectrum Disorder?

“If a teenager or adult is looking to self-diagnose, first ask why? If it is for identity purposes, then they don’t need a doctor. They can look at support groups and other autistic individuals they connect or resonate with. This self-identifying can often relieve anxiety and improve well-being.”

“A diagnosis requires some level of impairment in daily functioning. No such threshold is required for a person self-identifying as autistic. Thus, it is very plausible for persons to identify as autistic but not meet criteria for ASD”

This article makes some good points, though they’re nestled among pearl-clutching about teens, conformity, and social media use. A disorder is characterized by substantial impairment, but in my experience, the number of people who want to be labled with something like autism for the funsies, is much lower than the number of people who experience actual distress or impairment from their autistic traits.

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Formal Diagnosis: What should I expect?

The clinician(s) will be trying to determine if you meet the criteria for ASD based on the Diagnostic and Statistical Manual of Mental Disorders (DSM-5)’s Diagnostic Criteria for 299.00 Autism Spectrum Disorder.

Main Criteria:

To meet diagnostic criteria for ASD according to DSM-5, a child must have persistent deficits in each of three areas of social communication and interaction plus at least two of four types of restricted, repetitive behaviors.

The areas social communication and interaction are:

• Deficits in social-emotional reciprocity
• Deficits in nonverbal communicative behaviors used for social interaction
• Deficits in developing, maintaining, and understanding relationships

The restricted, repetitive behaviors are:

• Stereotyped or repetitive motor movements, use of objects, or speech
• Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior
• Highly restricted, fixated interests that are abnormal in intensity or focus
• Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment

Likely Diagnostic Tools:

The combination of the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) and the Autism Diagnostic Interview-Revised (ADI-R) have been referred to as the “gold standard” in autism diagnostic tools, though this seems to be more marketing than merit to some extent. These tools are widely recognized and validated for diagnosing autism and are often used together to assess social communication skills, repetitive behaviors, and developmental history.

See Exclusion of females in autism research: Empirical evidence for a “leaky” recruitment-to-research pipeline for research on the exclusion of females from autism diagnosis research.

Autism Diagnostic Observation Schedule, Second Edition (ADOS-2)

ADOS-2 is one of the most widely used and regarded as the “gold standard” for diagnosing autism. It is a semi-structured observational assessment that involves interactions with the individual to evaluate social communication skills, repetitive behaviors, and play. The clinician observes and scores the individual’s responses during the assessment.

See A Thorough Presentation of Autism Diagnostic Observation Schedule (ADOS-2).

We find robust evidence that confirmatory diagnostic assessments commonly used in autism research may contribute to the small sample sizes of females in autism research. By examining both our sample and more than 42,000 autistic individuals from eight comparison datasets, we find that utilizing self-report of community diagnosis can contribute to dramatically lower sex ratios in autism research. Our analyses reveal that even datasets that explicitly obtain diagnostic reports to confirm autism status had more balanced sex ratios than those that used only the ADOS. Strong reliance on such measures may play a role in perpetuating the disproportionate exclusion of females in autism research.

Per Dr. Donna Henderson’s correspondence:

I would warn Autistics who camouflage NOT to go to a clinician who relies on the ADOS.

Autism Diagnostic Interview-Revised (ADI-R)

The ADI-R is a comprehensive interview conducted with caregivers or family members to gather information about the individual’s developmental history and current behaviors. It focuses on communication, social interactions, and repetitive behaviors.

See Autism Diagnostic Interview - Revised (ADI-R)

Other Diagnostic Tools:

1. Childhood Autism Rating Scale (CARS)

CARS is a behavioral rating scale that assesses the severity of autism symptoms in children. It is based on direct observation and caregiver reports.

See Childhood Autism Rating Scale, 2nd Edition (CARS2)

2. Social Communication Questionnaires

Various questionnaires are used to assess social communication skills, including the Social Communication Questionnaire (SCQ) and the Social Responsiveness Scale (SRS).

3. Vineland Adaptive Behavior Scales (VABS)

“The Vineland Adaptive Behavior Scale assesses a person’s adaptive level of functioning by standardized interview of the person or their caregiver through their activities of daily living such as walking, talking, getting dressed, going to school, preparing a meal, etc.”

See Vineland Adaptive Behavior Scale

4. Gilliam Autism Rating Scale (GARS-2)

GARS-2 is “a 42 item norm referenced screening instrument used for the assessment of individuals ages 3-22 who have severe behavioral problems that may be indicative of autism”.

See Gilliam Autism Rating Scale (GARS-2) Warning: doc file download

5. Behavioral Assessments

These assessments may involve direct observation of the individual’s behavior in different settings, such as home, school, or clinic, to assess social interactions, communication, and repetitive behaviors.

6. Intellectual and Cognitive Assessments

Standardized intelligence tests, such as the Wechsler Intelligence Scale for Children (WISC) or the Stanford-Binet Intelligence Scales, may be used to assess cognitive abilities.

7. Language Assessments

Various language assessments can be administered to evaluate language comprehension, expressive language skills, and pragmatic language abilities.

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Self-Diagnosis: How do I do that?

When it comes to self-diagnosis, there are a few things to consider:

• What’s my current understanding of Autism and its traits?
• Have I explored any #ActuallyAutistic communities? Do their experiences resonate with me?
• Is it possible that I have another, or co-morbid condition (such as ADHD, depression, trauma)?
• What is my reason for wanting a diagnosis?
• Are you, or do you suspect you might be, Transgender?

That last one is a bit of a curve-ball and needs a little side-note here. Basically, autistic people are way more likely to be trans, and trans people are way more likely to be autistic than the general population. It’s still a small percentage either way, and you’re always more likely to have one than to have both (because that’s how statistics work).

“The incidence of 7.8% ASD in gender identity clinic referred children and adolescents is ten times higher than the prevalence of 0.6—1% of ASD in the general population” —Autism Spectrum Disorders in Gender Dysphoric Children and Adolescents 📄

“Systematic review [of the available literature] found a high prevalence of ASD in people with Gender Dysphoria” —Gender dysphoria and autism spectrum disorder: a systematic review of the literature 📄

Once you’ve done a little soul-searching (or purpose-driven internet searching), your next step is probably to take some online tests.

ASD Online Tests (and author’s scores)

Autism Spectrum Quotient (AQ)

The Autism-Spectrum Quotient Test (abbreviated to AQ) is a diagnostic questionnaire designed to measure the expression of Autism-Spectrum traits in an individual, by his or her own subjective self-assessment.

It was first published in 2001 by Simon Baron-Cohen and his colleagues at the Cambridge Autism Research Centre as part of the the widely cited study entitled The Autism Spectrum Quotient (AQ): Evidence from Asperger syndrome/high-functioning autism, males and females, scientists and mathematicians.

Your score was 42 out of a possible 50. Scores in the 33-50 range indicate significant Autistic traits (Autism).

The AQ-10

The AQ-10 Autism Spectrum Quotient (AQ-10) is a quick questionnaire that primary care practitioners can use to see if a person should be referred for an autism assessment.

Your score was 10. Scores of 6 or higher are indicative of autism or a significant number of autistic traits.

Empathy Quotient (EQ)

The Empathy Quotient (EQ) is a 60-item questionnaire (there is also a shorter, 40-item version) designed to measure empathy in adults. The test was developed by Simon Baron-Cohen at ARC (the Autism Research Centre) at the University of Cambridge.

Clinically, the empathy measurements provided by the EQ are used by mental health professionals in assessing the level of social impairment in certain disorders like Autism. However, since levels of empathy vary significantly between individuals, even between those without any mental health disorders, it is also suitable for use as a casual measure of temperamental empathy by and for the general population.

Your score was 15 out of a possible 80. Scores of 30 or less indicate a lack of empathy common in people with Autism or Asperger’s Syndrome.

Ritvo Autism & Asperger Diagnostic Scale (RAADS-14)

The purpose of the study behind this instrument was to develop a screening instrument to aid in the identification of patients who may have undiagnosed ASD.

Your score was 38 out of a possible 42. Scores of 14 and above are considered indicative of an Autism Spectrum Disorder.

The Camouflaging Autistic Traits Questionnaire (CAT-Q)

The Camouflaging Autistic Traits Questionnaire (CAT-Q) is a self-report measure of social camouflaging behaviours in adults. It may be used to identify autistic individuals who do not currently meet diagnostic criteria due to their ability to mask their autistic proclivities.

Your total score was 142 out of a possible 175.

CAT-Q scores	Neurotypical μ	Autistic μ	Your Scores	Previous Scores
Total score	109	122	142	149
Compensation	35	44	54	55
Masking	39	36	37	47
Assimilation	35	40	51	47

Notes:

• This table was specifically for non-binary people, though male/female values can be found at the link
• Test was previously taken on Feb 11, 2023 at 15:42

The Aspie Quiz

The Aspie Quiz is a self-administered questionnaire to measure autistic traits in adults (age 16+) with an IQ in the normal range (IQ >=80). In fact, it measures both autistic and neurotypical traits in five domains: talent, perception, communication, relationship, and social.

Your autism cluster score was 145 out of a possible 200. Your neurotypical score was 57 out of a possible 200. You are very likely on the broader autism cluster.

Clinical Partners UK: Adult Autism Test

30 questions that may be useful to understand if you are experiencing some of the common behaviours and thoughts associated with being on the Autistic Spectrum.

Your score was 25. Scores of 20-30 are considered indicative of an Autism Spectrum Disorder.

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Differential Diagnoses & Comorbidity

Autism shares a number of symptoms and traits in common with other disorders, and as such diagnosis can be tricky.

Autism’s Clinical Companions: Frequent Comorbidities with ASD

“Autism spectrum disorder (ASD) has a number of co-occurring physical and mental health conditions that are crucial for general pediatricians, family doctors, and nonspecialists to be aware of.”

“Diagnosis of comorbidities can be challenging because many people with ASD have difficulty recognizing and communicating their symptoms. Physical discomfort might prompt spikes in self-soothing repetitive behaviors as well as irritability, aggression, self-injury, and other challenging behavioral issues. That makes it difficult to tease out whether these behaviors are related to ASD or to physical discomfort caused by a co-occurring condition.”

For this section, I’ll primarily focus on the following:

Attention-Deficit/Hyperactivity Disorder (ADHD):

ADHD is a neurodevelopmental disorder characterized by symptoms of inattention, hyperactivity, and impulsivity. It frequently co-occurs with ASD.

Obsessive/Compulsive Disorder (OCD):

OCD is a condition characterized by intrusive and distressing thoughts (obsessions) and repetitive behaviors (compulsions).

Depressive Disorders:

Depression, including major depressive disorder, can occur alongside ASD, particularly in adolescence and adulthood.

Anxiety Disorders:

Anxiety disorders, such as generalized anxiety disorder, social anxiety disorder, and specific phobias.

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Is it ADHD?

“People with ADHD show a persistent pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development” —CDC: Symptoms and Diagnosis of ADHD

People with ASD show persistent deficits in multiple areas of social communication and interaction, as well as restricted, repetitive behaviors. —CDC: Diagnostic Criteria for ASD

Two key differences between ADHD and ASD being novelty-seeking vs repetitive self-soothing behaviors, and attention regulation vs social interaction difficulties.

Dr. Neff has a nice diagram that shows the overlapping traits that define ASD, ADHD, and OCD.

ADHD Online Tests (and author’s scores)

Adult ADHD Self-Report Scale (ASRSv1.1)

“The Adult ADHD Self-Report Scale Screener (ASRS) is one of the most commonly used self-assessment tools for adult ADHD. The ASRS was developed by the World Health Organization (WHO) and the Workgroup on Adult ADHD. This tool is meant to be used with people 18 and over and assesses for the most common symptoms of ADHD.”

“The ASRS-v1.1 is the longer version of the ASRS and examines 18 symptoms of adult ADHD.”

Your score on Part A was 3 out of a possible 6. Your score on Part B was 1 out of a possible 12. Scores in the 0-3 range are not indicative of ADHD symptoms in adults.

Female ADHD Test: Symptoms in Women and Girls

While ADHD is not gender-biased, symptoms do manifest differnectly in men and women. This test examines symptoms of ADD that are most common in women.

Your Score: 32 (Out of 72) The higher the point total, the greater the likelihood that you show signs of attention deficit disorder.

Adult ADHD Spectrum Self-Test

This test was created by Don Baker, MA, LMHC and UnpackingADHD.com.

You scored 42%! If your score was more than 50%, you live with many ADHD-related traits.

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Is it OCD?

“There’s a difference between the occasional intrusive thought or good-luck ritual and OCD. Obsessions aren’t the same as having any unwanted thoughts. With OCD, these thoughts are distressing and persistent.

The rituals of people with OCD could look like being careful or superstitious. Many of us double-check locks before going out to feel safe or knock on wood for good luck. But if you live with OCD, you might feel as if you have to carry out a compulsion, even when you don’t want to.“ —What is OCD?

OCD Online Tests (and author’s scores)

Obsessive-Compulsive Disorder (OCD) Screening Quiz

This short, free OCD test is meant for anyone who thinks they may benefit from an evaluation for OCD.

Your Total Score: 6 out of 20 (OCD Unlikely) A score of 8-12 indicates OCD is probable, 13+ indicates OCD is likely.

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Is it Depression?

Yes.

TODO: Elaborate and stop being flippant.

Depression Online Tests (and author’s scores)

Depression.org: Depression Test

Take this self-test to help figure out whether you’re showing any of the warning signs of depression.

Your score is 3 out of 27. While you might be feeling down right now, you’re not showing signs of depression.

What can I say, it’s been a good couple weeks. I normally score higher.

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Is it Anxiety?

Probably, to some extent.

TODO: Elaborate and stop being flippant.

Anxiety Online Tests (and author’s scores)

Depression.org: Anxiety Test

Take this self-test to get an indication of your anxiety levels.

Your score is 4 out of 21. Your score falls into the low range.

I haven’t had to attend any social gatherings or meet any tight deadlines in the last couple weeks.

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Discussion

First, to Dr. Donna Henderson: Thank you so much for reaching out and reviewing this project. It means so much to me. My only credentials here are that I work with research and data, and that people ask me to write my opinion on stuff. Your decades of experience—as a neuropsychologist and author of multiple books on the topic—are so appreciated here. Now on to the discussion.

1. “Self Diagnosis” vs. “Self Identification”

From Dr. Donna:

I personally prefer “self-identification” to self-diagnosis, since technically diagnosing is something a clinician does, and suggests disease or disorder. I also wonder if the defensiveness of healthcare clinicians would lessen slightly if this phrase is used instead.

I understand the desire to move the label of autism out of the stigma of mental disorder, and that distancing ourselves from the terminology of “diagnosis” helps in that respect. At the same time, I feel that legitimizing self-diagnosis of ASD requires us to use the same precise language as the scientific community. It should be understood—both by the layperson and the clinician—that self-diagnosis is supported by evidence and is sound.

Identity is certainly a large component, and in order to live happily and healthily as a person with autism, I believe the individual should understand that the label isn’t as important as getting support, finding community, and discovering what being autistic means to them. Research requires precision and repeatability, life requires understanding and self-compassion. To quote the UW Autism Center again, “We believe that if you have carefully researched the topic and strongly resonate with the experience of the autistic community, you are probably autistic”.

1. Expression of symptoms

From Dr. Donna

People need to really understand the many different ways that the diagnostic criteria can present, not just the few examples in the DSM. The DSM is focused on external, observable behaviors and ignores the subjective experience.

Donna was kind enough to include the Autism Criteria Summary Chart from her first book, “Is This Autism?” (by Donna Henderson, Sarah Wayland, and Jamell White).

Her breakdown of the DSM diagnostic critera vs. how people think about the criteria vs. how they can present in individuals with ASD who naturally or intentionally camouflage is well worth the read. It comes down to the nuance between a criterion like “differences in reciprocating social or emotional interactions” and the host of actual behavious and drives that make that up—each of which can present to different degrees.

For instance, she says that the criterion “nonverbal communication differences” is usually taken to mean no eye contact and/or flat affect, but it encompasses a number of differences, such as using eye contact to manage interactions, differences in body posture and personal space requirements, receptiveness to and expression of nonverbals, regulation of volume, intonation, prosody, etc.

Individuals with ASD who are more adept at hiding those behaviors (due to social pressure to conform) will often have developed mechanisms for presenting more neurotypically, but their experience of it doesn’t change. For example, I can shake someone’s hand, look them in the eyes, and make some small-talk at a conference, but I’m dying inside the whole time—it’s so uncomfortable. I don’t like strangers touching me. I don’t like touching people I don’t have a close relationship to. But a lifetime of having to “pass” for interviews, events, etc. has made me “able” to (perhaps convincingly).

Resources

• Embrace Autism: The Ultimate Autism Resource
• UW Autism Center: Self-Diagnosis-Friendly Resources and Communities 📄

NOTE: Need to decide if these sources’ quality and usefulness are up to snuff for this project.

• https://www.uptodate.com/contents/image?imageKey=PEDS%2F119225
• https://www.ohsu.edu/sites/default/files/2020-12/Managing_Autism_Phelps.pdf 📄

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