Is It Worthwhile To Seek A Formal Autism Spectrum Disorder Diagnosis If You Think You Have It?

You've always had a hard time with social situations, and now you've learned what Autism Spectrum Disorder* (ASD) is. You've been reading about it, maybe taken an online test or two, and it seems to describe you. You've also done enough research to know it's not something you can self-diagnose; plenty of people have some autism-ish traits without meeting the full criteria for the condition. A diagnosis has to be made by a qualified professional.

You also know that if you are curious about whether you have it, it's never too late to get assessed and find out. So the question is, if you suspect you're someone with a more subtle version of Autism Spectrum Disorder is it worth it to seek a proper diagnosis? There isn't one answer that will fit everyone. Below are some factors to consider when trying to decide if you want to go further down the diagnosis path.

(* The so-called "milder" version of Autism Spectrum Disorder used to be called Asperger's Syndrome. Some people still use the term, but it's getting more and more outdated.)

Possible benefits of a diagnosis

Getting confirmation that you're on the autism spectrum won't instantly fix your social life - that will still take work and practice - but it can give you the following kinds of help:

Answers about why you've been struggling with social situations for so long

Some people say they felt a huge sense of relief once they were formally diagnosed with Autism Spectrum Disorder. They learned there was a specific neurological variation behind their lifetime of social difficulties. It's not that they're a weirdo who's bad at relating to everyone. People may also say the diagnosis explained and tied together some of their quirks, like that they always hated the feeling of certain types of fabric on their skin.

A sense that you have a concrete obstacle you can work around

Before their diagnosis some people feel hopeless and like they just weren't meant to be socially successful. Once they learn they have ASD they know what the exact issue is, what its parameters are, and that others have gone on to have good social lives while having it.

Better direction about how to tackle specific social issues

Three people could have the same broad social problem, but require different approaches to tackling it. One may just need to push themselves to practice more. One may need to learn anxiety coping strategies. Another may need to spend some therapy sessions exploring their past to root out a deep-seated confidence issue.

Generally speaking, people with autism benefit most from detailed, specific explanations of how social situations work - they often stumble because they don't know what's expected of them. They also get a lot out of practicing how to identify and respond to the kinds of non-verbal signals they don't pick up on as easily as neurotypical people do. That's not to say other approaches won't do anything, but knowing you have ASD can point you to the methods that are most likely to pay off.

A fuller picture of your strengths and weaknesses and how your brain works

Autism Spectrum Disorder is a developmental difference that causes some interpersonal problems, but can also provide strengths, like the ability to dive deeply into a topic, work well alone, pay attention to details, or stick to your principles. Not everyone with ASD is the same, and neither is their mix of advantages and disadvantages, but getting diagnosed may give you a better idea of what areas are easier for you. That may be in a general sense - "People on the autism spectrum tend to be good at X", and more specifically - "This cognitive test shows you're personally really good at Y". Overall, knowing ASD has its pros and cons helps counter any ideas you may have that you're "all bad" because you've had some social issues in the past.

If you know you have ASD you may also get more insight into how your mind works. For example, rather than vaguely feeling you're strange and broken for not liking nightclubs, you can know that your sensory system tends to get overwhelmed in noisy, flashy environments, and that you'd do better hanging out with people in more subdued settings .

A sense of identity

Some people feel their autism diagnosis gives them a sense of who they are. They have a specific type of brain wiring that affects their personality and interests. They're part of a global community. They can learn about famous, admirable figures who had ASD, like they do. Again, it's not just that they're "socially awkward".

A community to connect with

Aside from abstractly feeling like part of a greater whole, knowing you have ASD can put you in touch with a practical, tangible community of like-minded people. You can stay at home, but still connect with the other members at online spaces about autism. There may be autism spectrum-focused meet ups and events in your city.

The liberation of having formal proof that you're not "normal", and you don't have to try to fit into mainstream expectations if you don't want to

Not everyone is happy to hear they're not "normal", but people who get a diagnosis later in life sometimes feel like a weight has been lifted off their shoulders. They've spent years trying to fit in and be accepted as a "regular" person. When they failed, they felt bad about themselves. When they managed to blend in here and there they still often felt fake and unfulfilled. Getting a diagnosis allowed them to decide, "I've got a piece of paper that says it: I'm never going to be someone who thinks or socializes like most people. So I may as well do what I like instead. I'm going to stop forcing myself to go bar hopping with my co-workers, even though I hate it. I'm done with scaling back my hobbies because I don't want to seem weird. I'm done with wearing uncomfortable outfits because that's what's expected of me."

Access to programs and accommodations

You may be able to access certain types of help for the difficulties ASD can cause, but only if you have an official diagnosis. If you have trouble finding work or staying employed, you may qualify for disability benefits. If you're not doing well at school or your job you may be legally entitled to reasonable accommodations, like having permission to wear headphones at the office to drown out distracting noises. A local autism services agency may hold social skills training groups, for those who have been diagnosed. Your health insurance or employee assistance plan may entitle you to free sessions of therapy, but again, only with a diagnosis.

A concise, handy explanation about your behavior and needs you can give to people

If you're talking to someone and you say something that turns out to be too blunt, you could go, "Sorry about that, I'm on the autism spectrum, and sometimes it leads to me be overly direct." If you're on a team at work and a new project manager comes on board, you could tell them, "I'm autistic, and one part of that is that I need any instructions you give me to be very clear and straightforward."

That's not to say it's always the best move to inform everyone you have ASD as soon as you meet them, or at all, but in the situations where telling them is appropriate it's a simple way to sum up your issues and tendencies.

Ruling out other diagnoses

Autism Spectrum Disorder is a developmental difference, not a mental health illness, behavioral problem, or an intellectual or learning deficit. However, its effects can appear in ways that look like those conditions, which can lead to misdiagnosis. Someone with ASD may have trouble in school and mistakenly be pegged as having ADHD, or have difficulty regulating their moods and be falsely labeled as having Bipolar Disorder. A proper ASD diagnosis can clear up what the real underlying issues are.

Putting other diagnoses into the proper context

While autism isn't a mental health issue, it can lead to them. The difficulties it causes can bring about depression and anxiety. These conditions may be accurately noticed and diagnosed, but without the knowledge that ASD is behind them, they may not be dealt with in the best way. Like if someone has Social Anxiety Disorder and is autistic, you'd need to first address the ways that social situations are harder for them. It's not a case of "Their social skills are probably fine once they're feeling comfortable." A formal ASD diagnosis gives you that extra information.

Even if you learn you aren't on the autism spectrum, getting a clearer picture of what's going on

It may not be the greatest feeling to still be in the dark about why you're struggling socially, but by ruling out one big possibility you're still a step closer to getting to the bottom of things. Maybe your problems are more related to anxiety, or childhood insecurities, or another kind of developmental difference.

Reasons people may feel neutral about pursuing a diagnosis

If their social issues are mild and they're doing well-enough in life, knowing whether they have Autism Spectrum Disorder may not matter to them

It's one thing to look back on a long string of failures stemming from your social issues and be desperate for an explanation and some future direction. If someone's life is going smoothly they may be more indifferent about knowing whether they have ASD. Maybe they were more lonely and awkward when they were younger, but have put the worst of it behind them. Perhaps they've always been seen as a bit odd, but they've made peace with their idiosyncrasies. One afternoon they learned about Autism Spectrum Disorder, read over its features and thought, "Huh, that describes me pretty well. I guess I could have it... ..." then went on with their day.

They think a loose, casual self-diagnosis is good enough

Some people know they can't officially diagnose themselves, but they learn about ASD and think, "That sounds exactly like me. All the suggestions I've read for how to address the social problems that stem from it seem helpful too. All in all it seems like a good framework for understanding and dealing with what I'm going through. From now on I'm going to operate as if I have it. I don't care if that's not a proper binding conclusion. It's useful enough for my purposes. It's not as if I want to apply for disability payments. I just want to find some good books on body language."

On the whole it's not that harmful if someone assumes they have ASD when they really don't. Though at the end of the article I'll cover a few possible downsides to getting the diagnosis, which can also affect people who assign it to themselves.

They want to address their specific social weak spots, and don't have a strong need know whether those issues fall under a diagnostic category or not

As mentioned, knowing you have Autism Spectrum Disorder can give you more information and context about your specific interpersonal trouble areas. However, some people feel they already understand the ins and outs of their social problems. They know they struggle with, say, following group conversations, understanding humor, and being empathetic. They want practical suggestions for improving, and don't see much use in knowing if their mix of issues can be captured by a particular term.

They think any diagnosis of autism is ultimately subjective, and that they'll never be 100% sure whether they have it or not, especially if they're a milder case, so they don't care

Again, they're more concerned with working on their nitty gritty social issues and don't care about broader labels. There's not a blood test to determine if someone has ASD. There's no clear boundary between someone who has mild ASD and a person who's "normal", but on the more awkward end of the scale. Any diagnosis is ultimately a judgment call on the part of a professional. If they've done their job they'll have gathered as much relevant information as possible and carefully compared their findings to agreed-upon criteria, but it's still subjective in the end.

The fact is some people are misdiagnosed too. They could have gone to a less-experienced clinician who seized on one or two of their odd behaviors and overlooked all the ways the condition didn't fit them. Or they were diagnosed when they were younger, and the psychologist misinterpreted an awkward phase they were going through. It supports a sense of "I'll never truly know, so why bother?"

Possible downsides of getting a diagnosis

These can come up with a self-diagnosis as well, which is one reason not to speculate about yourself, and get answers from a professional instead.

Some people believe Autism Spectrum Disorder is a flaw and feel worse about themselves for having it

It's becoming more and more accepted that there's nothing wrong with being on the autism spectrum. It causes some challenges, sure, but it doesn't make anyone a bad person. Not everyone feels that way though. They may see having autism as a sign that they're unlikable and socially defective. Finding out they have it would damage their already shaky self-esteem. Even if they admit they need to work on their social skills, they'd rather not pursue a diagnosis so they can stay in the dark, and always be able to tell themselves that they're just a run-of-the-mill late bloomer. Ideally, these people would educate themselves about ASD and learn to be more accepting of it, but I realize not everyone may be able to reach that mindset right away.

The autism label may cause other people to stigmatize you

Society is getting better little by little, but the reality is many people misunderstand and look down on developmental differences and mental health issues. Having a formal ASD label could hurt you at times. Possible friends who know your diagnosis may reject you without giving you a chance. If your employers find out, and they don't know much about the condition, it could set you back professionally. However, some people feel the benefits of being diagnosed outweigh these risks. Also, if you learn you have ASD it's not like you have to tattoo the fact on your forehead. You can be selective and strategic about who you tell.

Labels can make people limit themselves

Autism Spectrum Disorder makes it harder to get the hang of aspects of socializing, but it doesn't doom you to a life of loneliness. Lots of people with ASD have worked on their communication skills, learned to compensate for their weaknesses, and now have satisfying social lives. Some people let the label hobble them though. They become too quick to give up. Rather than persisting and just getting that extra dozen hours of practice at a skill they might need, they say, "I'm autistic. I can't do this. It's just not how my brain works."