Autism diagnosis criteria: explained (DSM-5)

Today I want to talk you through the DSM criteria for autism diagnosis,

which is used in the United States and parts of Europe.

The DSM, or Diagnostic Statistical Manual,

is kinda like the master textbook that psychologists use to diagnose people.

It’s developed by the American Psychiatric Association,

and it is very much focused on North America.

But it is written in rather hard to understand language,

so I wanted to take a look at it

and break down all the different criteria that you need

in order to get an autism diagnosis.

So that it’s a little bit more understandable for people who aren’t psychologists.

So here we go.

[intro music]

For those of you who are new to my channel, I am Sam.

I was recently diagnosed with autism as an adult and I now make article about autism and neurodiversity

right here on YouTube every single week.

So if you think you might like that kind of thing, please stick around for more Articles.

So we’re gonna look at the DSM today,

and although this is not used for diagnoses in every single country in the world,

there are some alternatives, the main one being the ICD 11,

which stands for International Classification of Diseases,

but for the purposes of autism the criteria in both of these manuals is kind of the same.

The difference with the ICD is that, as you might have guessed from the name,

it has been developed internationally.

Now I am not a registered psychologist.

I did study psychology at university, though, which helps,

though not in a clinical setting,

but I have also been through the diagnosis process with the DSM.

So this Article is kind of an attempt to get across what the heck it is all about,

and what it means with actual people and not theoretical examples.

Bear in mind before I begin that both the DSM and the ICD very much see autism in the sort of

disordered model, they both call it Autism Spectrum Disorder.

And so they kind of operate on this deficit-based model,

where you have to have deficits in certain areas.

This means that reading the report that they write about you afterwards

makes you feel really really tiny small and just pathetic.

But the reality is you can tick all the boxes necessary for a diagnosis,

and that doesn’t make you less-than.

It makes you a winner.

So this kind of disorder model,

which most people are familiar with to be honest,

is sort of what the neurodiversity movement is trying to counter.

And this is why I believe that neurodiversity is empowering for all autistic people,

not just the articulate and hyper-verbal ones, but for all of us.

So bear with me because the overuse of the word deficit makes me kind of twitch.

Right. So let’s start with category A:

Oh my god these sentences, they’re so much fun.

So this whole category generally means you’re bad at the social stuff.

Not just at home, and not just at school, not just in the workplace, not just at parties.

It’s a multi-system failure to “social,” in the way that is expected by society.

So within category A, there are three different points,

and you basically need to tick yes for all of these points in some way.

So number one:

This is a very, very long-winded way of saying

that you might be bad at interacting with people (in a way that is expected by society).

Social emotional reciprocity refers to the expected back-and-forth model

of neurotypical social interaction.

So a failure to do this

could be something like you meet somebody for the first time and immediately launch into a monologue

about yourself or about one of your interests.

You might not understand the rules of small talk and make, sort of, constant faux pas.

You might answer things very literally, or perhaps with one-word answers that kind of stop the conversation.

The the back-and-forth doesn’t happen quite as fluently.

And so for me, although I mask a lot

(although I mask less than I used to now, I think)

apparently in childhood, I just never shared my feelings.

When something was wrong; when I had a bad day, for example.

So the emotional reciprocity: that wasn’t fluent.

Somebody told me, “I’ve had a really bad day,” and I didn’t give them anything in response to that.

Especially if somebody said that they were sad in some way,

and I didn’t know how to reply to that.

I didn’t know what to say, what was expected of me.

So some conversations can be difficult, and I’m not saying that I can’t have a conversation.

I think that this is a skill that I have learned,

but even as an adult, I do struggle to maintain conversations,

especially ones that are built around

social protocol, like small talk, rather than being in-depth with somebody.

So point number two, that you also have to have,

that also counts under category A is:

And this one is a little bit easier to understand conceptually, but it is nestled in such a long sentence,

so I understand if you zoned out for a bit there, because I kind of did too while I was filming.

So here we’re talking body language and facial expressions.

So you might not like eye contact, you might not do it at all, or you might kind of try to do it, but use

it wrong, or you might just get very anxious about the whole concept of why you should be making eye contact.

You may not make facial expressions as expected.

Whether that is too much, or not at all.

When I was younger especially,

I found it very hard for me to control my facial expressions when something really bad happened,

So if I’d heard of somebody’s death, I would smile, or if I was telling somebody about somebody’s death,

I would smile.

I remember going to tell my best friend that Princess Diana had died, and I was smiling,

and she thought…

Well, she was a bit confused.

She thought I was joking,

but it was just kind of a thing that I I did and I don’t know why I did it.

You might also not be able to mimic or read other people’s body language very well,

and so you can’t really tell what their mood is from their nonverbal

tells, as it were.

So that’s really what number two is about.

It’s about nonverbal communication.

And you might be able to do it to some extent, but the point is that it’s an atypical expression of it.

So moving on to number three:

And what this really means, is that by the time you get to adulthood especially,

it’s just really hard for you to make and keep friends,

even if you try, even if you want the friends.

Obviously if you answered — if you ticked, yes to numbers one and two,

it kind of follows on that number three will be a yes as well, because if you struggle to communicate verbally

and non-verbally with the neurotypical majority, the chances are that it is harder for you to make friends.

It’s kind of a logical consequence.

So obviously I was asked about friends during my assessment, and

it was something like, “What does friendship mean to you?”

[crying child]

Well, what does it mean to be a friend?

[crying continues]

Every time I press record. There’s children outside screaming.

So I was actually asked about friendships during my assessment and something like,

“What does a being a friend…”

“What does that mean to you? What does friendship mean to you?”

And I found that so hard to answer.

And I have friends. I have had friends in the past.

But it’s always been a lot of work for me to maintain the friendship,

and really be sure that this person is a real friend and not just saying that they’re a friend

because they’re trying to manipulate me in some way.

And I think when I was younger, definitely, I had a much more naive outlook on friendship,

and kind of believed that you made friends and then you will just remained friends forever,

and hung around in the same friendship group forever,

just like you saw on TV.

But this is my particular presentation of how I kind of make friends.

Often autistic people don’t play, typically.

Although I dispute that autistic play doesn’t involve imagination, because I think it does.

But the sort of atypical play, rather than playing in the way that you would expect

other children to do, autistic children might play

off to the side or…

A lot of autistic girls do… I can’t remember what the word is.

It’s something like butterflying — flittering or something like that — where they kind of go from group to group,

so it looks like they are in the party, but they’re actually observing from the outside.

Right, so one two and three all need to count for diagnosis,

but you don’t have to fit in with every example that they give,

because some of them are contradictory to each other.

Moving on to category B, which I find a little bit more confusing, and that is:

So basically you only need two out of four in this next section.

I’m an overachiever, so I think I got three.

Let’s start with number one:

So what we’re talking about here is stimming. Which is kind of short for self-stimulatory behavior.

Whether it’s stimming with your hands, flapping your hands,

repetitive movements like this, vocally stimming, such as making…

making animal noises or something.

A lot of autistic people do a lot of meowing,

or copying other people’s phrases,

or copying things that you just said, which is called echolalia.

So that could be a phrase, a noise, or a sound.

Sometimes these noises can be quite annoying.

Number two:

So this is the one that I didn’t relate to as much.

I’m quite a flexible person in some ways,

but I’m not really really stuck on sameness in the way that some autistic people can be.

But that’s okay, because you only need two out of four in this category.

So this is just my presentation of how autism is,

and there are many autistic people that do suffer distress when you make small changes in their routine,

and that’s just as valid as my autism.

But I do relate to it somewhat,

especially when I was younger, I was a little bit more rigid, I think,

especially when it comes to food.

I would only eat food a certain way.

And so, this sort of need for sameness often makes autistic people appear

controlling or even manipulative,

which they’re not being because it’s an anxiety response.

They need to have things that way, and this isn’t about controlling other people.

This is about their own experience.

And it doesn’t always follow that you change something slightly and that equals a big meltdown.

That’s not how autistic people work.

There are autistic people who could meltdown at small changes in their lives,

but it’s usually not just that one thing.

It’s usually a build up over several days, or maybe over several weeks, or even months.

So when you think of a transition, that they mentioned difficulty with transitions,

this could be as simple as going from doing your homework to going to have dinner.

A transition in your day to day life,

but it could be something more significant like finishing Senior school and going to university.

That’s a significant life transition.

And that’s hard for everybody,

but for autistic people it can be especially hard.

Actually, I did do a article on my experiences at university, which kind of go into the fact that I found it a really

difficult transition to do, so do check that one out if you’re interested.

Moving on to number three, which is:

They really had to work hard to make special interests seem quite so disordered, I think.

This is what they’re talking about:

they’re talking about autistic special interests.

The thing about this one is that it seems like there is a particular focus on how “normal” or “appropriate”

the interest is, and I find this extremely distasteful.

That it is written up like that.

That a special interest that brings someone joy can be so pathologized.

But here it is.

This is what they mean by that.

If you get any autistic person to finish the sentence, “when I was X years old,”

Let’s say, “when I was 10 years old. I was obsessed with…”

And see what comes up, because it is such a broad spectrum, and we’re not all just interested in

machines or objects.

We can have a special interest about anything, and believe us:

then once you get us going, it’s hard to get us to stop.

But I like to think that’s part of my charm.

Some people carry on with these very intense interests their whole lives,

and that’s just their thing, and some people have shorter intense interests

which they then move on from and get bored,

and that’s kind of where I sit.

I’ve been through so many really, really intense interests, some of which I kind of carried on

and some of which I’d drop.

So it’s basically like a very intense version of “going through a phase.”

So for me, my special interests, in chronological order, have been

Gymnastics,

The Spice Girls,

the TV show Friends,

the TV show Buffy,

psychology,

atheism and religion,

gluten-free food,

nutrition and the ketogenic diet.

Then, once I became a parent, it moved on to childhood development and parenting.

YouTube analytics and SEO,

and of course,

Autism.

And none of these things are, in my opinion,

pathological to be interested in.

It’s not a problem that I’m interested in these things,

and honestly,

it’s not been a problem that I’ve been really really obsessed with them.

And I’ll use that word: “obsessed.”

I was obsessed with Friends, but do you know what that obsession helped me do?

That obsession helped me learn to code HTML because I wanted to do a Friend’s fansite.

It connected me with people from around the world.

I ended up having some of my scrapbook Friends art being sent to, I think, Courtney Cox

on their last day of filming.

So, special interests open the world to autistic people,

and it’s problematic that it’s pathologized,

but there you go.

And when you’re in this love affair with your special interest,

it’s all you want to look at, research, read about, talk about.

It’s like being in love with a topic.

Moving on to the last one that category B, which is number four:

This is quite self-explanatory.

This is about sensory issues.

And as a hypersensitive autistic person,

I always have to remind myself not to forget about the hypOsensitive autistics out there.

So basically, we are kind of, like, at the extremes.

And this is why autism is a neurological condition and not a behavioral or psychological one.

It seems the actual way our brains are physically wired is different from neurotypicals.

And this starts with the very basics: how we sense the world. How we sense our surroundings.

I have noise sensitivity that gets much worse during times of stress,

but I’m also a visual seeker,

so I really enjoy visual stimuli.

You know, like glittery things, sparkly things, oozy things.

Good oozy things, not bad oozy things.

I also don’t like being touched by strangers.

I don’t really like being touched by surprise.

Like, if somebody sneaks up and gives me a hug I’ll probably scream, [chuckle]

but I really like deep pressure such as massage, or big squeezy hugs, or weighted blankets.

So that was point number four, and you need to out of these four that I’ve just mentioned

to continue to get your diagnosis.

Moving on to category C, now.

Which is:

Basically, this means that this isn’t something that you acquired,

because you can acquire symptoms that are similar to autism,

through an a traumatic brain injury, for example.

But this basically means that you’ve always been like this,

and you were like this as a child.

And it’s very difficult to tease it out, especially if there has been childhood trauma or abuse,

but that is what a good diagnostician is there for.

If that’s not the case, then it should be reasonably self-explanatory, at least for yourself,

as to whether you’ve always been like this.

But this is a very crucial point because it mentions masking,

specifically, and also hints at the fact that maybe if you had a really nice stress-free childhood,

you might not necessarily show any issues until demand exceeds capacity.

And for me, even though looking back now,

I can definitely see my autistic traits in childhood,

they didn’t cause me a problem until, I would say, puberty.

And that was when the social stuff got more confusing, I had a larger workload,

so my executive function issues were more noticeable,

and then things kind of, like, I would say…

progressively got worse throughout my 20s and early 30s.

So that’s category C. It needs to have been there since your childhood.

Right, so we’re onto category D,

which is my least favorite of the categories,

and you’ll soon see why.

So this is really the one that I think needs rethinking the most.

You could agree with every single autistic trait, or symptom, or whatever,

but because it doesn’t cause distress that means you’re not autistic?

That just doesn’t seem very likely.

The thing that’s hard is living in a world that’s not set up for you.

Let’s say that you grew up in a family that accommodated your needs

without really knowing that that’s what they were doing.

Maybe you found a job in a very autism-friendly industry or company,

you had a few friends who happen to also be autistic.

So maybe it never gets to the point of distress.

You have a simple life, you have a stress-free life,

but that still makes you autistic,

and I would say that the more stress that you put on autistic people, the more obvious our traits can be.

I understand why they put this in.

Because their reasoning is,

“if all these happy little autists got diagnosed,

“First of all, it would be an epidemic! It would be an autism epidemic!

“But the system would be overrun, they’d have to support all these autistic people.

“So maybe we should save the diagnosis for those who really need them.”

I don’t agree with this, because you can be functioning fine at a point in your life,

you relate to all the autistic traits, and they say, “yeah, but it’s not really causing you any problems.”

Maybe 10 years down the line

it does start to cause you problems.

You’re no more autistic than you were 10 years ago.

But for most… many… a lot of…?

I’m not sure exactly the numbers,

but for some autistic people, especially if you were not diagnosed in childhood,

when you were diagnosed as an adult,

You’re usually diagnosed because of a breaking point.

And this could be a period of depression, a period of anxiety, losing friends or a partner, losing your job,

or struggling to find employment, and even a full-blown autistic burnout.

And all of these things do count as clinically significant.

So don’t think that just because you haven’t had a meltdown in public,

or you haven’t done this, that you don’t have clinically significant signs of autism.

Because if it’s causing you suffering in your everyday life, you need to get that across to the diagnostician.

But I think it’s a problem that we won’t diagnose a neurotype on the basis of, well,

“You’re not suffering -now-, are you?”

So the final category is category E, and this is:

That these disturbances…

Disturbances. [scoff]

That’s a very complicated sentence, as well.

But basically, before they diagnose you with autism,

they want to exclude a more general delay that isn’t specific to autism.

Because it used to be the case that autism was lumped together with intellectual disability,

which I think is where a lot of the stereotypes come from.

But they now have to rule these things out,

and in my assessment, they also ruled out other things like personality disorders, psychosis,

and that kind of thing.

But you know reading this whole thing is kind of making me feel bad about myself.

I’ve tried really hard to be confident and proud of being autistic.

And this is, I think, what happens when the medical and deficit-based model of autism

is the sort of prominent one,

because this is about box-ticking.

This is about identifying a disorder,

about using normal behavior as a benchmark for identifying “abnormal behavior,”

because you can’t have abnormal unless you have an idea of what normal behavior is.

But although all of these points can be misinterpreted by clinicians who don’t, maybe, have a good idea

of how autism can present in adults or in women,

I do think that they make sense in a lot of ways,

and I identify with them, and that’s how I got my diagnosis.

It’s just about knowing what they actually mean when they say,

“stereotypes or repetitive behaviors.”

What does that mean?

That’s a weird thing that doesn’t have much meaning.

But if you say, “do you constantly bite your nails?

“Do you constantly fidget? Are you pulling your hair like this?”

I’m sure then people would give a lot more examples.

So there’s a definite barrier in terms of the language that they use.

And I think the other big problem with this, and this isn’t just for the DSM, but this is the process in general,

Is that a lot of it is through interviews and self-reporting,

and if you are asked, “do you do something normally or do you do something unusually?”

Maybe you and your whole family think that you’re normal,

because that’s how things have always been for you, and that’s normal for you.

So it’s very difficult to know whether something you experience

is actually how everybody else experiences things.

Even though I think that we know our own experience,

the difficulty comes in trying to compare that to what other people’s experiences are like.

Because autistic or neurotypical, nobody actually knows what anyone else is feeling on the inside.

And if you come from a family of autistic people, how on earth are you supposed to know

what neurotypical people are like?

And the thing that really bugs me about this disorder/deficit model

is that there is no room for autistic joy.

And by that I mean,

it’s strange that special interests are so pathologized

when they’re some of the things that bring us the most joy and most value out of life.

And I think it’s pretty awful that that is treated as though it’s a deficit,

when the truth is autistic perseverance and special interests have

pushed technology and the world to new limits.

So I hope that I’ve explained it in a way that makes you get what it’s saying.

I have broader criticisms of the diagnosis process in general. It’s imperfect.

I think it will always be a flawed process until we can do a brain scan and diagnose autism like that.