Getting an adult autism diagnosis – is it worth it?

When you come to the realisation that you might be autistic as an adult, it can really hit you right in the face.

At that point, though, you might think what is the value in getting a diagnosis at this point?

Is it even worth pursuing? You’ve come this far, so why bother now?

Stay with me because we’re going to discuss this right now.

Hi everyone if you’re new to my channel, I am Sam, I was recently diagnosed with autism as an adult,

and I now make Articles on autism, neurodiversity and exploring the autistic experience every single week.

So, if you think you might like that sort of content, please hit the subscribe button and the notification bell so you never miss a Article .

So, a few people have requested this Article from me

because they’ve sort of had that a lightbulb moment that they think they might be autistic,

but they just don’t know whether it’s worth pursuing it, taking it further and getting that kind of official

autism stamp of approval.

Now, I apologise in advance that I really cannot make this decision for you.

I’m not good at making decisions in my own life as it is.

But hopefully I can give you some points to think about so it might help you come to your own conclusions

about whether you want to pursue a diagnosis.

As always, please share your experiences about the diagnosis process in the comments below.

It really helps out the autistic community to have that kind of information out there,

and this is something that is different for every country, even different by region,

and everyone has their sort of own unique challenges on the path to diagnosis

and there aren’t that many resources out there for helping people to make this decision.

So hopefully we can try and help anyone who’s also coming to this realisation figure out what they want to do next.

Now, we’re talking about adult diagnosis here,

so the first point that I want to make is that

most adults who have been diagnosed in adulthood have gone through a long period,

months or even years, of being considered self-diagnosed.

Now, I totally believe that self-diagnosis is absolutely valid.

But I think it might be more helpful to think of it more like self-identification rather than self-diagnosis.

So anyone can self-identify as autistic, but a diagnosis is something that’s made by a medical professional, if that makes sense.

The reason that self-diagnosis might not be a very helpful term is because it implies that we’re practising medicine at home with the help of Dr. Google.

And to be honest, Dr. Google can be very useful, if applied sparingly and with a good amount of critical thinking,

but many people and many healthcare professionals are really put off by this idea,

because I guess there are a lot of people that don’t know how to do good research online and don’t know how to apply that to real life.

But typically when you first kind of think that you might be autistic,

autistic people have a tendency to dive right into a topic and do a lot of research,

almost to the point of becoming a little bit obsessed – you can say we kind of fall down that rabbit hole.

And I’ve had comments from you guys saying that my channel has been a part of this research, and I’m truly humbled by that, so thank you for those nice comments.

I’ve certainly had that lightbulb moment myself and just sort of hoovered up all the information that I could find on the topic.

Of course, I have a degree in psychology, and so I have some knowledge of research and statistical methods,

so it was very natural for me to look at this information and kind of apply it critically to my own situation.

But even though I researched the heck out of it and I really knew that I was right,

I did ultimately decide that I needed the diagnosis for myself.

And, most importantly, I had the means and the privilege to be able to pursue that.

But I totally stand by those who don’t or can’t, and please don’t think that you’re any less valid because you don’t have access to a diagnosis,

because at the end of the day only you can know how you feel and think,

and only you know who you are deep inside.

So in the spirit of a sort of pro/con list,

let’s talk about some reasons why you might want to pursue a diagnosis and why that might be a good idea.

So let’s start with medical and professional vindication and this is otherwise known as “I’m not crazy, I’m autistic”.

[voiceover Sam] Hi guys, I’m just editing this Article right now, and I wanted to clarify what I just said.

I’ve generally been trying to stop myself using the word crazy,

as I am aware it has some pretty ableist connotations,

but I basically slipped up trying to make a point here,

as I wanted to acknowledge the fact that many of us have been called crazy throughout our lives and many of us have wondered if we are in fact crazy.

I am aware of this, I didn’t mean to do it and I really didn’t mean to put it like that,

but I’m still learning and trying to improve so sorry about that.

I feel like this is very important if you’ve been gaslit a lot by doctors,

saying that it’s all in your head or these symptoms aren’t that bad or anything like that.

And I think that that was the thing that I needed the most was the medical and professional vindication.

When you have been told your whole life that you’re too sensitive, you’re too shy, why are you so weird?

Why are you like that? You’re this, you’re that, it can be really powerful to say, especially to doctors,

No, I’m none of these things. I am autistic.

And that’s not to say that the A word is some sort of magical password into autistic nirvana,

but it does help you take yourself more seriously and be taken more seriously in situations where you might be more vulnerable.

And if you’ve been suffering with poor mental health your whole life the realisation that: I’m not crazy, I’m autistic, is very important.

Especially if you’ve had people around you your whole life that have been gaslighting you.

Although a meaningful understanding of autism isn’t guaranteed by any means by all medical professionals,

it is getting better. Things are improving, knowledge is improving

and I hope to be a part of that movement that helps improve understanding of autistic people,

not just by laypeople,

but by the medical community as well,

who still clearly sometimes don’t really understand what autism is and how it actually affects us.

And the thing is, once you have a diagnosis, you have a word, or a “label”, to help describe yourself and your perspective.

The idea of labelling yourself is I think unfairly maligned because labels can be very useful.

Labels help explain yourself succinctly to other people without launching into a long monologue about your life and your struggles.

And an official label helps communicate to other people that your autism is a real thing.

Especially if these people aren’t familiar with autism or are generally skeptical of self-identification.

A label doesn’t necessarily guarantee, but certainly increases the chances that others will take us and our needs seriously.

Another real positive that is often overlooked, is that you feel like you are “allowed” to be a part of the autistic community.

Now many autistic communities, many online groups, if not most online groups, they do welcome people who self-identify

but from my perspective it’s more about me. I certainly understand feeling like a fraud in these groups.

Even though they say you’re welcome here I still felt that until I had that little stamp of approval.

I wasn’t really supposed to be there.

Only after diagnosis could I say to myself “I belong here” and really mean it.

If, like me, you’ve been brought up with and internalised the mindset that you need external and a sort of official validation,

a diagnosis can put you on the path to self-acceptance like you’ve never been able to do before.

I’ve certainly felt like that over the last year, that I can understand myself better,

be kinder to myself and know that I’m not a broken version of a neurotypical person,

but I’m just what I need to be.

So now we come to the negatives, or con-list if you will, of pursuing or getting a diagnosis.

I would say that the main barriers to diagnosis are cost and wait time,

and these are factors that depend so much on your location.

For me diagnosis was completely free and covered by my insurance, and I waited about four months,

which is pretty much as good as I think anyone can reasonably expect.

But for some people in certain locations,

it can cost thousands, and the waiting time can be three years or even more,

and this is obviously prohibitively expensive for most people,

especially when an adult diagnosis seems like kind of an optional extra that you don’t really need.

And this can be really hard to justify to yourself and your family when you have so many other things going on in your life.

With such long wait times, it can also be hard,

because you might not be able to access other mental health services at this time,

and you might not yet be entitled to services for autistic people, so you could end up being stuck in a sort of limbo,

during a time when you obviously need help the most.

This is especially why it’s important that we, as the autistic community, accepts those who self-identify without an official diagnosis,

because these people might typically be on a low income,

or with other real obstacles in their life. But that doesn’t make them not autistic,

any more than I was not autistic in the first 33 years of my life.

Our job in the autistic community is not to be gatekeepers to a label,

but to allow people to understand themselves and take comfort in the fact that they’re not alone.

Now, time and cost are not the only barriers.

If you are unlucky enough to get an assessor who has ill-informed or old-fashioned ideas about how autism presents in adults, and especially adult females,

you might have wasted time, money and energy on it for nothing, and feel more confused about it than ever.

It can be really a shock to the system when you are so sure that you’re autistic and somebody turns around and says “no I don’t think so”,

because it makes you think “do I really know myself at all?”

Being told that you’re not autistic after going through all of that must be a crushing blow to people

and I can understand people not even wanting to pursue it on that basis alone,

especially if they mask a lot or look normal or are very articulate

and have other qualities that might lead people to say “well you don’t look autistic”.

Not only this, but the assessment process is really raw and quite painful.

It definitely forces you to examine your whole life and you can bring up a lot of painful memories,

unresolved issues or unresolved situations in general.

If you’ve suffered trauma or abuse it can really open a can of worms and

autistic people are far more likely to develop PTSD than someone from the general population.

So you might need further support after your diagnosis,

and that might have to be given by people who aren’t willing to entertain the fact that your Assessor might have made a mistake.

Even if you do get the official diagnosis, there can be fallout.

You might think that you get a special Autism medal and then we skip away into fields of poppies and rainbows

to live happily ever after

but the truth is a lot of the hard work and even some of the grief comes afterwards.

A diagnosis gives you a lot of thinking to do,

and forces you to consider the possibility that you’ve been living your life disabled and not even realising it.

Now I use the word disabled with a great deal of care

and the concept of autism as a disability is something that I will explore in much greater detail in another Article.

But a diagnosis in some ways forces you to mourn the life you could have had,

had you known.

It forces you to reevaluate decisions that you made out of fear.

It’s not quite been a year since I got my official diagnosis and

I’m only just getting to the point where I really feel like I’ve processed it,

come to terms with it and it’s become a part of my accepted identity.

It takes time and patience and self-care,

and if you haven’t had a lot of therapy in your life, this process can really take much longer than a year.

And without a real striving for self-reflection and help, some people might never reach it.

The last point that I want to make about assessment and diagnosis,

it’s kind of a criticism in general of the psychological assessment process

and our beliefs that psychologists have, sort of, some kind of magic, science, mind-reading knowledge.

Now, I recently did a Article where I took the Autism Quotient or AQ test and I talked through my answers and the results.

So if you click up here you can have a look at that one.

But those of you who have already seen it will know that I had a lot of criticisms about this test.

Psychologists use tests as tools and some of them view them as gospel truth and others use them to supplement a diagnosis in a more holistic way

but the thing about tests is that many of the questions are really heavily open to interpretation,

and from your perspective, as in the one who is being assessed, taking tests doesn’t actually give you any further information about yourself

which you weren’t already able to access, and this is important.

Testing for autism is not a blood or genetic test…

not yet at least…

It is a trained observer’s assessment of the information that you provide them.

Even reading my own diagnostic report,

kind of paints a picture of myself and my childhood and my upbringing that absolutely makes me cringe to read it.

When I read it for the first time I would- I was thinking “I didn’t really say that” or “I didn’t mean it like that”.

There is so much information to get through in a few sessions

and if you have the whole of your life to discuss, it can get pretty complicated

and long-winded and you’ll likely leave things out or not explain things correctly.

Psychologists might be professionals, but they’re not superhuman.

They can’t read your mind and they too will rely on mental shortcuts and assumptions about you or your behaviour.

So I’m not saying that all assessments are bogus, that’s not what I’m saying at all,

but if you choose not to get one or get a diagnosis you don’t agree with,

or have your GP tell you you’re not autistic in the first meeting, when you know in your heart that you are, that’s okay.

We’re all just trying to find our way in life and assign meaning to our experiences.

Doctors are not arbiters of objective truth. They are just humans like you and me, but with different levels of experience knowledge and insight.

I hope this has helped some of you and not just confused everybody too much.

There really is no right answer to the question of whether or not you should pursue a diagnosis, or whether or not it’s worth it.

In an ideal world, it would be easy, quick and simple to say yes or no and get a definitive answer,

but we don’t live in that world and everyone has different factors to consider and different situations in life.

I personally have found great peace within myself as a result of my diagnosis.

I was definitely in a situation where I needed that external stamp of approval, if not to…

diagnose but just to corroborate what I already knew.

Furthermore, the access to support that I have been entitled to as a result of my diagnosis, has been invaluable

and it’s coming to almost no financial cost to myself which I appreciate is such a privilege.