About this post: Within the autistic community, self-diagnosis is often accepted as a valid identity. This is because it can be very difficult to obtain a formal Autism diagnosis. This post looks at several factors that contribute to the difficulty of obtaining a formal diagnosis.
In the US, pediatricians, psychologists, psychiatrists, and neurologists can complete formal testing for Autism Spectrum Disorder. According to several studies, many US physicians reported not having the specialized knowledge to diagnose and even screen for Autism. Another study from 2019 found US medical students reported not receiving sufficient training on Autism. I myself, doing an undergraduate degree in psychology and a graduate degree in clinical social work, barely learned anything about Autism. graymatters was actually the first time a workplace or educational setting provided me specific training on Autism, which opened the door for me to pursue further research and training.
Lack of knowledge and specialists
The lack of availability for Autism assessments can also depend on geographic location. For example, a more well resourced area like Washington DC has 60 child and adolescent psychiatrists per 100,000 children while the whole state of Idaho, home to many rural communities, has 5 per 100,000. And if we look further for someone who is specialized, there are 4 developmental behavioral specialized pediatricians per 100,000 children in DC while Idaho only has 0.2.
Symptoms get overlooked in women and AFABs
Recent studies estimate people AMAB (assigned male at birth) are three to four times more likely to be diagnosed with Autism than people AFAB (assigned female at birth), and there are several reasons why this could be.
Autism was first thought to be a “male” disorder so the majority of the early Autism research, development of diagnostic criteria and making of assessment tools was based on the male presentation of Autism. Later studies have found there are neurological differences in sex for austitic individuals, which can lead to different presentations. For example, due to differences in gray matter content in the brain, autistic individuals AFAB often engage in less repetitive/restrictive behaviors and may have less motor skill issues than autistic individuals AMAB. So if one does not present with these behaviors, they may not receive an Autism diagnosis.
Studies have also shown that autistic females mask their symptoms more than male peers. Societal expectations that are placed on women, such as to be polite, nurturing, and soft spoken, can lead autistic girls at a young age to mimic and camouflage in order to fit in.
Autism can be mistaken for several other types of mental health diagnosis
Those who have gotten a late diagnosis of Autism may report that they were misdiagnosed with another mental health condition. This is because a provider without training in Autism can mistake certain traits/symptoms of Autism for something else. For example, the rigidity of needing to follow certain routines and becoming anxious when those routines are broken can be mistaken for a symptom of OCD. The difficulty of regulating emotions and interpersonal relationships can be interpreted as a Borderline personality disorder or a mood disorder. And while ADHD and Autism can both be present in an individual, sometimes Autism gets missed completely and diagnosed as ADHD due to shared difficulties in executive function, hyperactivity, and impulsivity.
In one study with 182 autistic adults, 41.8% either somewhat didn’t agree or entirely agree with other mental health diagnoses they have received. One participant with difficulty with eye contact and socialization, which can be present in autistic individuals, said “…I was given antipsychotics for my behavior…they think because [I don’t] look at them and [I] am nervous of talking then [I] am ‘guarded’ or have a ‘flat affect’” (Au-Yeung et al., 2019).
Cost and wait
While the Affordable Care Act and other state laws have made it a requirement for insurances to provide coverage for Autism screenings, testing, and evaluations, many state laws do not specify the amount the insurance has to cover. Therefore, the amount of money reimbursed can differ based on your insurance plan which puts people with a poor insurance plan, or no insurance plan, at a disadvantage. And out of pocket, Autism evaluations can cost up to $5,000.
If one is able to afford an evaluation, the wait time to receive evaluations and a diagnosis can be long. A recent study found that parents have to wait on average 2 to 4 years between when initial concerns for their children are brought up to the diagnosis, even though the recommended maximum wait time between the referral and diagnosis is 5 months (Smith-Young et al., 2020). And for adults wishing to get an Autism evaluation, the average wait time from referral to diagnosis is 162 days (McKenzie et al., 2015).
Over reliance on formal testing
While the ADOS is considered the “gold standard” for diagnosing Autism, it can be lengthy, expensive, and even unnecessary. The ADOS was initially designed for research purposes, not for general use. Clinicians with specialty in Autism don’t need an ADOS to assess for Autism, but can diagnose it clinically in the course of their work with a patient. For those that don’t need written documentation of an ADOS, working with a clinical social worker or mental health counselor who has knowledge/specializes in Autism is a good place to begin exploring the possibility of a diagnosis.
Formal testing, like with an ADOS, is often most important for children who can then qualify for medical, social and educational resources if diagnosed formally. However, most adults who wonder, “Do I have Autism?” could also make an appointment with a psychiatrist, psychiatric nurse practitioner, neurologist or other clinician specializing in Autism spectrum to be assessed for Autism, even without a formal ADOS.
Can online scales diagnose Autism?
Diagnose and self-diagnosis are two different concepts. A diagnosis usually refers to a medical diagnosis where an individual meets a thresshold of criteria, and that diagnosis can be used to inform treatment or provide accommodations. A self-diagnosis usually refers to when someone feels they may fit a medical diagnosis and chooses to self-identify within that group, even without a medical diagnosis having been made. Sites like https://embrace-Autism.com provide education and also online questionnaires to help people see what characteristics of Autism they might embody.
Working with an Autism trained professional can be helpful even for someone who has already self-diagnosed. For one, a therapist or doctor with a specialty in Autism can help someone to better understand themselves better.
Also clinicians with an Autism specialty know that medical diagnoses and lived experience don’t always overlap. If we rely too rigidly on medical diagnosis alone, there are many people who don’t meet enough criteria so they don’t qualify for the diagnosis of Autism, but their lived experience is very similar to others with Autism. A clinician who really gets Autism wouldn’t invalidate someone’s lived experience even if they don’t meet all the criteria but can help that person better understand the ways autistic traits may be presenting in their life.
Do I need an Autism diagnosis?
If you or someone you know is looking to get an evaluation for Autism, it’s helpful to ask yourself the following questions:
Do I need (extensive) documentation for the purpose of obtaining sought after resources or accommodations?
Do I want to obtain a diagnosis to help me understand myself better?
If extensive documentation is required for some outside purpose, you’re probably better served getting an ADOS. However, if a brief letter or documentation of an Autism diagnosis is needed, you probably don’t need an ADOS and would be just as well served by getting a clinical diagnosis from a therapist or doctor specializing in Autism.
Written by Mairead Keogan, LCSW, psychotherapist at graymatters
**At graymatters, “treatment” can mean many things, and most importantly, is something that’s tailored to the needs and the perspectives of our clients. It can lean towards medical, towards psychological or somewhere in the middle. Working with a therapist familiar with neurodivergence can be one way to not only work on overcoming challenges, but to also learn to unleash your superpowers! **
