How do I get a diagnosis?
This is often the first question people ask when they figure out that they may be autistic. What I tell people who are at the beginning of their journey is to focus less on diagnosis at this point and more on learning about yourself. Not forever, but as a first step. Why? Many reasons! But before we get into that together, let’s dig into the pros and cons of diagnosis, shall we?
- For many, diagnosis provides validation that there is a true, physical, identifiable reason that life isn’t as they or others might expect it to be. Receiving an official diagnosis can help to dispel multiple misdiagnoses, speculation, concern, confusion, etc. It may even identify separate but related issues you’ve struggled with without knowing such as ADHD, Sensory Processing Disorder, Synesthesia, or Alexithymia. #KnowledgeIsPower
- It can be a concrete reason to reframe the challenges, differences, and other seemingly exclusive-to-you experiences of your life and find that they were, in fact, not due to laziness, lack of discipline, disinterest, or a host of other imagined character flaws. Diagnosis can provide clarity and great relief.
- Diagnosis can be a personal gateway to greater acceptance and self-compassion. An official report may be the signal you need to allow you to shape a life that fits, to ask for what you need, pursue personal and professional goals, live without apology, and to be your authentic self every day.
- A diagnosis report can include access to information and resources in your specific region and beyond that can help you to not only learn about yourself and others who share your experiences, but also bring you into an entirely new community of peers. It can open up the world to you, possibly for the very first time.
- In addition, and perhaps most important, diagnosis can provide access to services and protections where needed. As “autistic spectrum disorders” are part of the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), healthcare providers may be legally bound to include diagnosis and support services as part of their coverage and employers may be legally obligated to provide access and support for autistic employees.
While an official diagnosis can be life-changing, it’s important to also consider that:
- Diagnosis, for many, is a privilege. It is often an out-of-pocket cost that can range from a few hundred to several thousand dollars. It is just plain unavailable for many groups such as residents of countries where autism is still misunderstood, residents of areas where specialists are scarce, communities where stereotypes of who can be autistic do not match the local autistic population, or groups who have been shut out of assessment due to medical gender inequity, racial biases, age, and more.
- Scientific knowledge about autistic neurology is in its infancy as compared to that of, say, the cardiac or digestive systems. Many of the researchers studying autistic people worldwide are still working within limited scopes of age, gender, ethnicity, socioeconomic status, etc. On top of that, statistics on autism aren’t acquired with equal rigor to many other population metrics.
- Diagnosis methodology has not yet been standardized. Because the official definition of autism is a work-in-progress and because societal approach to autism does not have consensus, it’s a bit of a wild west out there when it comes to screening and evaluation. Depending upon where you live on the planet, you may have access to a diagnostic evaluation process that is very different from a person half a world away. Autistic people have reported having to try multiple times with different diagnosticians before they’re correctly recognized.
- If you’re an adult in mid-life or later who does not require institutional-level supports such as from an employer or school, a formal diagnosis may not lead to substantial changes in your day-to-day life.
- Depending upon where you live, a diagnosis listed on your official records may negatively affect your everyday life. Some segments of society classify autistic traits as undesirable and seek to eradicate them, limit access to basic rights for autistic people, and impose other limitations (such as denial of organ transplants) or removal of children from parental custody. Research policy in your region to inform your choices. Society has a long way to go towards being adequately informed and accepting of neurodiversity.
So which is it?
Whether or not you access what can be seen as an official stamp of approval, remember, if you’re autistic now, you’ll be autistic forever. Diagnosis won’t alter that in any way. You are who you’ve always been: you!
Choosing whether or not to pursue diagnosis is a highly personal decision that is affected by your life circumstance, your support network, what your hopes are for the future, and countless other factors. ** No one can nor should decide for anyone whether they should or should not seek diagnosis. Period. **If you’re an adult, this is your decision. Sure, ask for advice and ask for opinions but in the end, this choice is yours and yours alone.
Further, the choice you make this year may change next year or ten years from now or whenever. When you learn more about yourself from this new vantage point and as you live more in your possibly autistic skin, your preferences, needs, and more will change. You’ll see yourself and your life differently. This is true at every age so unless you have an external, pressing need for an official diagnosis report, you can seek one or not. Whenever it is that you’re ready (even if that’s never) is just fine.
But for real, how do I get one?
Diagnosis is a service provided by specialists trained in, and experienced with, assessing the traits and behaviours characteristic in autistic adults. As assessing adults rather than children is a recent development, historically speaking, many adults find theirs to be a long, difficult search. Community referrals and patience are key.
Depending upon where you live, you may have access to diagnosticians with an extraordinary depth and breadth of experience or you may find that diagnosticians are nearly impossible to find. If you’re outside a major metropolitan area, be prepared to make a journey or, more likely, several.
If you’re not male, your search will likely be even more difficult because assessment in women, non-binary, gender-fluid, and agender people is an emerging field. Autism can be more difficult to recognize in people who have been socialized and/or are biologically compelled to conceal their differences from the larger social group. You’ll need to inquire about the diagnostician’s specific experience with groups outside the clinical literature (which has historically been predominantly focused on white male children although this is changing).
One starting point is to ask your family doctor, therapist, psychologist, or psychiatrist for a referral to an “autism diagnostic specialist”. At this time in history, you may find that the people you ask for help don’t agree you need assessment or they don’t have resources geared towards adults. Thank them and keep going. Only qualified specialists will be up to date with diagnostic protocol. They’re the ones who’ll say yay or nay regarding the classification of your neurodiversity. No one else.
A community-maintained map of assessment and counselling services worldwide.
When you find someone, ask questions. You’re the one seeking assessment which means that you’re absolutely allowed to ask for specifics about the testing procedure such as location, duration, format, etc. You can ask whether they’ll want relatives to participate and ways you can make that happen. If you don’t have relatives, ask what your options are. You can ask how much it will cost and whether they’ll accommodate your payment needs. Ask anything you want until you’re comfortable with moving forward. And when you get the report, feel free to provide feedback and request changes. If something was misunderstood or misreported, they should be happy to make corrections.
What if I don’t want one?
Choosing not to seek formal diagnosis is a valid choice. It’s needs stating that it’s always good to be extra-cautious with self-identification of any sort–especially based on internet quizzes. The internet is not a trained, qualified specialist with ample clinical experience.
There are many situations that, on the surface, appear similar to autism. Only a medical professional can determine which, if any, apply to you. Many people who choose not to seek an autism diagnosis have already been working closely with doctors, searching for answers for years. They may have received other diagnoses that didn’t quite fit, have several diagnosed family members, or have other valid support for their conclusions. Their decision to stop short of formal diagnosis often comes after a substantial journey.
It’s interesting to note that autistic people tend to report one specific shared experience. When we first encounter the idea that we might be autistic, after doing a bit of research, many of us report an “a-ha” moment unlike anything else. For the first time, we recognize ourselves! When you’ve been The Only for your entire life, that’s a huge deal that’s not easily dismissed. Finally there’s an explanation for the difficulties of your life! Finally there’s a description of what it’s like to be you! It’s exhilarating.
This was 100% true for me. When I first saw myself in the stories and experiences of others, I knew I was on the right path. I was 42 years old then and up to that point, had not ever heard anyone describe my inner life so clearly, or at all, really. It was like a cool drink after too long in a scorching desert. Like many others, I “self-diagnosed” my autism after much in-depth study of validated, published materials, scoring my traits with the screening tests used by clinicians, studying the self-reported experiences of others, and much critical reflection. Like many others, my months of self-analysis was later confirmed by a clinician.
If this is true for you too, you may be content to stop at this recognition of yourself in the stories of others. Let me encourage you not to. While you may choose not to seek diagnosis, there’s so much to gain from seeking out yourself. There’s nothing to stop you from trying for yourself the adjustments and gear that make life better for autistic people. If they work for you, fantastic. If not, no harm done.
If this is your choice, please do weigh for yourself the effects of self-identification on the larger community. It’s likely harmless to privately identify with a group and to live your life accordingly. But to represent oneself publicly as part of an underserved, misunderstood, and often vilified minority could be damaging to the community without your being aware. If you’re unsure, consider keeping your neurodiversity private until you are.
Start with a focus shift.
Remember when I said that learning about yourself was a great first step on your journey to diagnosis? Right now (today!), before you get to any of the official business of finding a diagnostician, you can take concrete steps to move closer towards your authentic autistic self. How? You begin by taking baby steps towards seeing yourself more clearly. Finding out you’re autistic usually means seeing your entire life, current and past, with new eyes. Everything shifts. Learning more about your current self and reframing your past leads to better self-awareness, self-acceptance, and a better quality of life for your future. Clinical assessment alone can’t do that. Not by a long shot.
A great first step in your journey to self-knowledge is seeing yourself mirrored out in the world.
What’s that mean? Mirroring (in this context) is when you see yourself in others. If you’re an autistic adult who’s just now figuring your neurodiversity out, for most of your life you’ve probably lived on your own metaphorical island. Your island is probably a place where life isn’t the same as anywhere else nearby and where you work overtime to smooth out the waves that come regularly crashing on your shore. You’ve likely developed a boatload of coping strategies, observed an incredible amount about how the world around you works, and amassed masking skills that are Oscar-worthy.
As a result, you’re likely living with a good deal of anxiety and probably some depression as well. When you’re constantly told you’re not doing it right and when you observe that the way you are in the world doesn’t quite cut it, well that tends to wear a person away. One of the most powerful moments in this journey you’re on is when you see/hear/read strangers talk about their lives and realize they could be talking about yours too. Seeing ourselves mirrored out there lets us know that we’re not so odd, not so alone, not so wrong.
Allow me to start you off with a virtual bottle of bubbly across your bow. Your homework assignment on your way to living your best life is to take in as many autistic personal stories as you can. Then do it again and again. Don’t stop for the rest of your life. Watch. Listen. Read. Whatever you’re going through, at whatever age, there will be autistic people the world over sharing that experience with you.
And how do you do that, you ask? When you’re ~2% of the population, you’re not going to just randomly find people who know what you’re talking about, who mirror you. You need to go looking. Here are some video diaries and podcasts to get you started. Read autistic autobiographies. Join some groups online. However you go about it, do the one thing that promises to change your life:
Go out there and find yourself in your community.
You’ll be glad you did. Then, after getting more familiar with who your autistic self is in your skin and in your world, you’ll be in a great place to decide whether an autism diagnosis is right for you.
Update: June, 21, 2019
Here’s @IndieAndyUK‘s video on this topic. Enjoy!
For more videos on autism by autistic vloggers, check out our collection of playlists!