Obtaining an adult autism diagnosis can be a life-changing experience, providing important insights and opening doors to necessary accommodations and support that you may have wished you had your entire life. However, the adult autism assessment process is often less standardized compared to childhood evaluations because studies are mostly performed on children, leaving a gap in understanding autism in a more nuanced way. If you’re contemplating an adult autism assessment or wondering “How do I know if I’m autistic?”, it’s crucial to understand what to expect and how to advocate for yourself throughout the process.
In this guide, we’ll cover the top 5 key points you should know before deciding to pursue an autism evaluation as an adult, including potential co-occurring conditions you may want to discuss with your clinician.
Contents
- 1 1. Find a neuropsychologist who specializes in adult autism diagnosis
- 2 2. Understand the evaluation process
- 3 3. Advocate for inclusive assessment approaches
- 4 4. Be prepared to discuss your lifetime experiences
- 5 5. Prepare for potential costs
- 6 Developing Your Self-Advocacy
- 7 Have follow-up questions?
1. Find a neuropsychologist who specializes in adult autism diagnosis
The gold standard assessment for adult autism diagnosis is a comprehensive evaluation conducted by a neuropsychologist who specializes in diagnosing autism in older individuals. These clinicians have extensive experience identifying autism in adults and can provide the most accurate diagnoses. They will be able to support a differential diagnosis, which is when co-occuring conditions have an overlap in symptoms, and should have a better idea of the different ways neurodivergence presents itself.
Sophia’s note:
It’s important to know that this isn’t always the case. In my own experience, I went to a psychologist who only ever identified ADHD/autism in children and would parrot the same old ableist line of: ‘You’re able to sit in your chair, though, so why do you think you have ADHD?’ He was considered an ‘expert’ in his field. Juxtapose this to when I got a second opinion with someone who was trained in adult ADHD and kept up to date with new research, he saw all the textbook signs of ADHD’s presentation in a femme of color.
When I moved and had another ‘expert’ within the NHS system. The ‘expert’ couldn’t tell the difference between ADHD, PTSD, a personality disorder or autism—even though they got a letter from my psychologist saying I was dealing with a post-traumatic response following bullying and harassment. And, when I pushed the ‘consultant psychiatrist’ on this, my autistic presentation as a femme of color who is also medicated for ADHD, was seen as a problematic narcissist.
In short, do what you can to safeguard yourself from further ableist harm. And if you are bamboozled by someone who markets themselves as an expert but turns out to have hidden ableism, remember that you have choices and can follow any of the following steps to find someone else. You do not have to stay in an environment where you’re not appreciated or valued as a sentient being.
2. Understand the evaluation process
That brings us to the next tip: Understanding the evaluation process for an adult, specifically. Currently, there is no universally mandated or standardized process for assessing autism in adults. Be sure to ask your chosen provider about their specific evaluation methods and what the final report will include to ensure the assessment meets your needs. You can do this during the consultation prior to booking the appointment for assessment, so you can also gain an understanding on whether or not their knowledge and expertise will be able to comprehend how you experience the world.
There are many different types of assessments, like ADHD, PTSD, depression, or alexithymia—which are all potential conditions that can exist alongside autism. So it’s important to know what assessments are available to you, and what the process would look like so you can make informed decisions as you navigate the medical process. To learn more of the different types of assessments, or even if you might need a label to affirm your experiences, you can learn more from familiarizing yourself with the psychometric tests by looking at reputable sources online.
3. Advocate for inclusive assessment approaches
Traditional autism assessment tools have historically been biased towards young, white, cisgender boys. If your identity isn’t any one of these, your neurotype may present differently than the assessor expects. And, if they don’t have a nuanced understanding of the many different ways neurotypes can present based on socioeconomic, cultural, and environmental factors, and they aren’t willing to understand, you might want to consider looking elsewhere and providing feedback for more inclusive assessment approaches.
It’s hard because sometimes we really like the practitioner, but if they’re not open about their level of understanding, they can project their misunderstandings onto you.
Sophia’s note:
For instance, the third ‘expert’ I mentioned in tip 1 perceived feedback as challenging her authority, and she then projected that insecurity onto me thinking that I must have been a narcissist. It’s interesting because this isn’t the first time I was accused of that. My sister, who didn’t understand different neurotypes at the time, accused me of either being a narcissist, borderline, or bipolar. Each of these, especially personality disorders, overlap and are common misdiagnoses for autistic femmes. In fact, I was misdiagnosed as bipolar when I was the mere age of 14! I didn’t get diagnosed with ADHD until I was 32—a whole 18 years later. I also didn’t realize I was autistic until after I started ADHD medication and it slowed down my brain from masking so quickly.
Now that it’s been 18 years, and now that my sister understands the different presentations of neurotypes, she actually jokes about all the mercurial and Gemini ways that I research before I engage in conversation about a topic. I even tell loved ones that “My problem is, I’m sure. If I wasn’t sure, I wouldn’t be arguing this so hard. But, I am sure, so I know I’m not wrong and I’m tired of being told I am and expected to just sit and pretend I’m wrong when I’m not.
Now that people are confronted more with the different ways neurotypes present, I’ve had a much easier time than I did when I was younger. I went from an angsty teenager who always had to have the last word to an person who might actually know what they’re talking about. It’s freeing…when you’re in an environment that understands you, that is. And when you’re not, it’s important to create safe spaces where you can. That’s why, it’s important to weigh up the benefit of having someone you like but isn’t knowledgeable about the nuances of your neurotype, and someone who is a standard professional but is knowledgeable about your neurotype.
And, just to be clear, never ever settle for someone who gives you a plate of heebies on the side of a bowl of jeebies! Get outta there and find someone else.
4. Be prepared to discuss your lifetime experiences
The adult autism assessment will largely focus on your lifetime experiences and symptoms. It can be alarming to recount these when you’re not prepared because a lot of these experiences had caused us trauma even if we aren’t formally diagnosed with PTSD.
While it’s arguably the most autistic thing to do, this is where scripting comes in. You can Google a list of autistic symptoms from the DSM-5 and think about situations where you presented with those same symptoms so you can have an idea of what the practitioner will ask you and how you might answer. They will likely ask for further details, and that’s okay. It’s usually to get a fuller picture of how you experience the world.
Being ready to provide detailed information about the challenges you face, the sensory sensitivities you experience, the difficulties with socialising (including being always misunderstood because you’re speaking directly while everyone else is non-direct), your routines, and so on may help with preparing for the memories you might have to confront.
This will also help the clinician understand if there are any co-occurring conditions like ADHD, anxiety, depression, and/or complex PTSD. By obtaining a comprehensive assessment that considers any co-occurring issues can provide a more holistic understanding of your unique neurotype.
5. Prepare for potential costs
Adult autism assessments can be quite costly, and often require significant out-of-pocket expenses due to limited insurance coverage. For instance, even though I’m originally from the so-called US and now living in the UK which provides me access to the NHS, the waiting list for a ‘non-emergency’ diagnosis like Autism/ADHD can be up to 2 years. You then are contending with inexperienced clinicians who are considered the ‘top of their field’ but do not keep up-to-date with new research and understanding. In fact, even along with the experiences I shared above, I met a Black so-called Texan nonbinary person who attempted to be assessed by a NHS doctor for ADHD and was told that it was a, “Made-up American illness”!
The only real way to get a diagnosis by a competent individual is if you live in the urban areas, where the system is already constricted due to lack of funding while contending with a dense population due to legacies of segregation and redlining. The other is by paying out of pocket for a private assessment which is far and above what an average person would be able to afford. I know my only positive experience with a clinician was seeing someone privately, and by charging the whole thing to my credit card.
Where possible, ask about sliding scale options, alternative pricing plans, or any available payment plans. And where this isn’t an option, I can only offer a suggestion of asking a trusted loved one to support you with paying for this because health is not a priority under capitalism and it would be disingenuous for me to pretend you have a lot of options when it comes to being able to afford someone you can trust and feel is competent in understanding you. In those cases, maybe consider a coach who offers sliding scale instead so you can get some support rather than nothing at all—because, at the end of the day, we want to support you whether you have a formal diagnosis or not!
Developing Your Self-Advocacy
Navigating the adult autism assessment or diagnosis process requires a significant degree of self-advocacy. By educating yourself with the knowledge and expectations, you can increase your chances of a positive and productive evaluation experience.
Remember: you are the expert on your own lived experiences. Don’t hesitate to voice your needs, ask clarifying questions, and advocate for an assessment approach that aligns with your unique circumstances and identity. A skilled clinician should welcome this level of engagement and be willing to work collaboratively with you.
While the process can be complex, understanding these key points can help you feel empowered and prepared. With the right support and self-advocacy skills, you can gain invaluable insights and access the accommodations you need to thrive—even if you have to get creative.
Have follow-up questions?
We wouldn’t be us if we didn’t! You can listen to Danielle’s in-depth responses to your most asked questions about the adult assessment in Episode 40 of The Neurodiverging Podcast.
And consider joining our Patreon for a private neurodivergent community for $3 per month to get support from others as you navigate the process—because, you’re not alone.