Funding for To The Contrary provided by: This week on To The Contrary: The key thing is that famous saying if youve met one person with autism, youve met one person with autism.

Not to kind of assum that they will have superpowers, or they will behave in a particular way.

With the right education and the right people around them., that's going to lead to the best long term outcomes, because you're going to see all of the way that a person can be successful.

Hello, Im Bonnie Erbé.

Welcome to To The Contrary, a discussion of news and social trends from diverse perspectives.

Up to 80% of autism cases among girls and women may be missed.

Because these group can internalize and keep secret their symptoms.

Among black women and girls, autism could be missed because the criteria experts use may overloo culturally distinct expressions.

With us to discuss this very broad topic is Jules Edwards, member of the board of directors at the Autistic Women and Nonbinary Network, and Gina Rippon, professor emeritus of cognitive neuroimaging at the Aston Brain Center in Birmingham, England.

Welcome to you both, and thank you for joining us.

Since this is a condition that's really affected by gender differences, let's start there.

Why is it that women and men present so differently with autism?

While autism has no gender, there are different expression of autism in different people.

We call it a spectrum disorder because no two people are exactly the same, and so, my work is gender inclusive.

So when I talk about boys and men, I include trans boys and trans men.

And when I talk about girls and women, I'm including trans girls and trans women.

And because gender is a spectrum, gendering autism can contribut to erasure of non-binary people.

Autistic girls and women, non-binary and trans people are left behind when it comes to autism identification and support.

People who are assigned male at birth are more likely to be diagnosed because initial autism research was developed based on research of white boys from higher socioeconomic statuses.

So that is where initial autism research started, and we haven't caught up yet.

That's wh our current data from the ADDM, which is the Autism and Developmental Disabilities Monitoring Network, they just released their updated prevalent study information.

They claim that 1 in 20 boys are autistic and 1 in 70 girls are autistic.

And that disparity isn't— Thats quite a gap, isnt it?

It's huge.

And it's a not an accurate representation of prevalence.

It's just the best data tha we have given our current tools.

So there are far too many undiagnosed girls and women who are struggling.

Professor, what about you?

What do you see as key signs that somebody has this condition?

Well, I think that particularly with respect to very young children, it's— The problem emerges early.

And because we have a very clear picture of what it looks like in boys, that very often is, the picture that people have is, you know, this is what autism is like.

You have a boy who is disruptive, perhaps, who has problems with making friends with people, who doesn't seem to connect with anybody.

Well, so there's a key picture for that, but with girls, it's different.

And I think that's where the difficulties arise.

I think what's happening i that, the girls tend to be shy.

They tend to try and fit i so they don't show up as having a particular problem.

And ho does that hurt women and girls?

That they're less likely to show up early on.

Well, with respect to the, the kind of work that I've been looking at, the earlie the identification of a problem, not necessarily an intervention, but an acknowledgment of a problem, the better.

And so if a girl goes through her primary school years appearing to be the good girl, you know, very quiet, stands in the corner, doesn't make a fuss.

But inside she is actually very distressed.

She's trying to hide the fact that she's experiencing difficulties which she knows are not acceptable, but which she doesn't want to rock the boat if you like, so she doesn't get the support she needs.

She doesn't, particularly if she's got sensory difficulties, for example, it's always down to her to tr and hide the fact that she finds bright lights and loud noises problematic.

And it's often not until, secondary school that the difficulties emerg when they change to high school, difficulties emerge because life has got much more complicated.

And the fragile scaffolding they've put in place to hide their difficulties is no longer fit for purpose.

Girls and women are harmed by this late diagnosis because we don't have access to, to supports and services that help us improve our quality of life.

It means that our teachers may misunderstand us.

Our parents may misunderstand us, and we lose out on quite a bit.

We have difficulty with friendships a lot of the time.

We may only have 1 or 2 close friends rather than a bigger friend circle.

And of course that varies by person.

It's not the same for everyone.

Those difficult experiences with other people can lead to trauma.

It can lead to people withdrawing.

It can lead to depression, anxiety, especially social anxiety.

And it can really impact a person's life long term to not have proper identification.

Once that identification is made, it's really important that someone, has information about their diagnosis and learns, what does this mean for me, specifically?

What symptoms do boys exhibit that are key to experts?

Autism is a social communication and sensory disability, and we need to understand that how we're socialized impacts how autism is expressed in the person.

Because our diagnostic tools are nearly all based on a clinician's observation of behavior.

Despite autism not being a behavioral disability there's a lot that gets missed.

So males are more likely to be socialized to reduce outward expressions of emotion.

You know, we hear that boys don't cry, etc., like we condition our young men to be less expressive of emotion.

So that means people who are socialized as boys may be more likely t have what we call a flat affect as an indication of autism.

And that means, maybe their facial expression, is not showing the, the expected responses to other people.

So that's something that can be more common in boys.

Girls are more likely to be socialized to be caregivers.

We give our girls dolls, we teach them to take care of other people and to set aside their own needs.

And so people who are socialized as girls may be more likely to pretend to be okay when we're struggling.

And that's one form of masking.

And then in order to identify cultural disparities, we need to understand that social norms vary in different cultures.

So one example, diagnostic criteria often relies on eye contact as a distinguishing feature.

But not every culture thinks that eye contact is even respectful.

So we want to make sure that when we're evaluating someone for autism, are we taking into account their cultural background?

Are we taking into account their experiences as a unique person?

And where do the experts, teachers, nurses, educators, where do they usually spot autism first?

It really could come from everywhere.

It could come from parents being concerned about something that's happening in their child's life and asking for help.

It could be teachers.

It really could be anybody who notices that a kid is having a hard time.

But then as we age, and this is especially relevant for autistic girls and women, who are missed, for so long, our diagnosis is late.

So for autistic women, a lot o the time, it's a self-referral.

A lot of the time it's a parent of an autistic child saying, hey, I think that might be me too.

And, professor, how would you advise teachers and other school professionals to deal with kid they believe could be autistic?

Do you think that they should be really—step out and say, look, this is a problem.

If you're experiencing a, b, c please come see me after school and we'll get you in wit some people who can really help you, if indeed that is what's going on with you.

And if not, and you just want to be checked, let us know.

We'll be happy to check you anyway.

Some way of pulling them towards the officials surrounding education but not in an embarrassing way.

Yeah, I think that's that's the key point because the earlier, the better.

And I think teachers hav sort of fallen into what I call the male spotlight problem with respect to autism.

So have a clear picture about what autism should look like.

So if parents raised a problem, and it's a gir theyre raising a problem about, the first issue is, you know, oh, no, she can't be autistic.

She's a girl.

So I think awareness, education, understanding that it can present differently, and that, you know, there are things that can be done because of its sensory difficulties.

Very often accommodation can be made.

And I think also with respect to early on and to teachers, and this applies to all neurodivergent populations, it's the kind of acceptance that there are people who experience the world differently and not to pinpoint them as being— and this is referring to the children— not to pinpoint the as being weird or unusual, etc., because we know from our neuroscience studies that social rejection, affects these individuals very powerfully, particularly in females.

And therefore the experience of that from a very early age is hugely damaging.

So what tips do you give to school authorities, psychologists, assistant teachers, people who come in contact with these kids?

What should they be looking for and aware of and raise it in a self affirming way, not in a critical way?

From my perspective, the key aspect of what I've been researching and writing about is this issue of camouflaging and masking.

The fact that there are a group of individuals on the autistic spectrum, many of whom are female, who from a very early age are hiding the fact that they're autistic, because they feel it means they won't fit in, etc.. And I think that's what people should be looking for, because by definition, if they're camouflaging, it's difficult to see.

But now we're more aware of it, then that's the kind of, you know, there should be some red flags raised in, in the kind of clinical assessment because they appear to be passing the assessment.

And that's why they, very often theyre missed.

But then if you look ver carefully at the words they use, the kind of repetitive scripts that they're using, you should start to think there is something different about this child that we need to look at further and not misdiagnose them or miss them altogether.

And let me ask both of you what strengths do they have that non—that people without this syndrome don't have, usually?

Most autistic people have what we call, a spiky, spiky skills profile.

And it may mean that a person is very good at doing one task, but struggles and needs a lot of support with a different task, and it wouldn't be what you might expect.

So if a person, has a hard time tying their shoes, we tend to think of someone who can't tie their shoes as needing an exceptional amount of support.

But there are teachers and attorneys and doctors, like successful people who are autistic, who have a really hard time with tying their shoes, but they're really good at their job.

So I think that it's really important to understand that autistic people, with the right supports, with the right education and the right people around them, who are building them up and making sure they have opportunities, that's going to lea to the best long term outcomes, because you're going to see all of the ways that a person can be successful.

So I'm, I'm a writer.

But I have a really hard time with like reciprocal— reciprocal conversation.

I tend to, you know, monologue a little bit.

That's really common for autistic people and especially autistic girls.

So that's a trait that I have.

But I'm an excellent writer.

I've asked about this a little bit, but, professor, could you draw some of these people out by focusing positively on the skills that come with autism?

Yes, indeed.

I mean, I think one of the things rather, oddly, you might think for somebody who's autistic is that they can be very, very socially aware, very highly socially tuned, because in a way, that's what they've been doing all of their lives.

So that's something to bear in mind.

They are very often, can focus, and on, as, as Jules was saying, o a particular area of expertise.

So they can become this kind of hyper focused expert on one particular areas and attention to detail.

But I think the key thing is that the famous saying, if you've met one person with autism, you've met one person with autism, not to kind of assum that they will have superpowers or they will behave in a particular way, but as in a way you should be doing with everybody just to see what their strengths are and to make sure those are drawn out.

Because for them that is very important.

And acknowledging their strengths and making sure they're embedded in a group in some way will reap amazing rewards.

And as with any condition, physical, mental, you name it, there are really good talents that come to some peopl in the groups that are affected.

So when we're talking about autism, what talents could this condition make even better, improve in people with the condition?

Honestly, anything that a person is passionate about.

I think that's one of the great things about autism is that, most autisti people have a special interest, or something that they are really excited about.

And, it could really be anything.

It could be music.

There's some excellent musicians who, historically we speculate they may have been autistic, and there are modern musicians who are—who have come out and told the world that they're autistic.

There are scientists, there are a lot of scientists who are probably on the spectrum.

Genuinely anything: electricians, tradespeople.

I once saw this article and there was a photo of a bricklayer who had done this exceptional, beautiful pattern with the bricks that they were laying.

And they kind of highlighted how his autism helped him to become this, like, master at his work.

And I think that that's something that, we really need to harness as a community.

We need to understand that, just because a person doesn't— —has a disability it doesn't mean that they can't, you know, set goals for themselves and live the life that they want to do.

So there's not one specific thing.

It could be whatever that person is passionate about.

But what—you mentioned brick layers and you've talked about some of the jobs where they tend to fi in really well, how do they make their most important contributions to society?

Is it through music, art?

Labor?

What—what is it?

Anything.

It could be anything.

We're just— I think that, it's importan to understand that, like, autism is just a natural variation in human neurology.

There's so much speculation about what causes it, but I look at my family tree, and I know the apples come from apple trees, and not every branch on the tree has apples.

But several of them do have apples.

And I am an apple, and my children are apples.

And at least one of my parents is an apple.

So, it, you know, we have to just celebrate the, the people who are here and be excited about whatever contributions they make, whatever the accomplish— accomplishments are.

Like thats something we need to really like, highlight and celebrate.

And we need autistic kids and autistic young adults to see autistic adults, like thriving and role models.

So I think it's—it's great to, to notice all of the contribution that autistic people have made, and make sure tha kids know that they can grow up and do exactly what they want with their lives.

We don't tell kids like, oh, you can't do anything you want just because of a new diagnosis, right?

Is technology helping diagnose people with—with autism?

I think with respect to the kind of work I'm doing, it will certainly she a more detailed light on autism because we know autism is a hugely variable condition, or wed be talking about special skills.

But there are, of course, people at the other end of the spectrum who—who are, you know, to use the term advisedly, quite impaired.

And there's a whole tranche of contributions to this picture of autism.

It could be genetic, it could be hormonal, it could be endocrinology, endocrinology, etc.. And I think if we can find a way of putting all of those data together, and of course, amazingly rich brain imaging data to put all of that together and start using AI, for example, to identify patterns within those data that might be much more informative than struggling around with labels, different types of autism, even, you know, not using the term male autism or female autism, but just saying, let's have a look at these huge data sets.

Because certainly in neuroscience, there are now huge data sets so that you could ad all the other possible variables you think are important, which a human mind possibly couldn't en—envisage how they might work together and even, you know, the system we're using to spot differences.

But if you could feed it to an AI system and say, can you see any patterns in this huge amount of data that might help us—are there different kind of genetic patterns or, or, or hormonal pattern or behavioral patterns as well?

Because of course, what we really want to do is, is to say what help do these people need?

If they do need help, and maybe we could spot symptoms rather than just put a label on an individual and assume that tells us everything.

And since this is the mont when people in the autism field are looking around and wanting to help people with autism, what do you suggest they look fo and what do you suggest they do if they find somebody they think could be helped with therapy?

April is an exceptionally difficult month for autistic advocates, specifically because there's so much misinformation and ableism making the rounds.

And it is very problematic.

It can be exhaustin for autistic advocates to combat this constant stream of harmful information that isn't necessarily true.

So we have to, you know...

I apologize.

When you're talking— spell this out for me a little bit, though.

When you're talking about harmful information that's being spun out.

What harmful information is that?

And what do people who fear, think can conside whether they have autism or not?

How do they handle the volumes of information that they'll find online?

One of the most important things is to find a variety of sources of information.

And figure out what's relevant to you.

So some of the misinformation is that autism is a behavioral disorder.

It is not.

It is only social communication and sensory.

But the sad part is that i is diagnosed based on observable behaviors and not a person's actual experiences in life.

And that's one of the reasons that girls and women are left so far behind, especially when it comes to this.

There's a really sad fact that over 90% of autistic girls and women will experience sexual assaul at least one time in their life.

And I believe the percentage is over 40% will experience sexual assault ten or more times.

Yikes.

It is horrifying.

And we're doing almost nothing.

We're doing almost nothing to protect our children.

We're teaching our children the exact opposite of what we need to teach them.

Which is...?

Right now we need to teach, our autistic children how to say no and how to be effective in how to say no, because what is happening right now is children are being trained to comply with directives from adults, and they're not taught about bodily autonomy, they're not taught to set boundaries.

And I'm saying they but I'm including myself in this because when I was growing up, I didn't know how to set boundaries for myself.

And I experienced that very same harm.

And so I'm very passionate about that.

And as a Native American woman, those statistics are worse for my community.

And we really need to have more information.

We need to teach our girls and women how to protect themselves in a very dangerous world.

And those are important life skills.

Those are safety, self-preservation skills that we're just completely ignoring.

And our girls are being harmed.

Our women are being harmed.

And it's people across the spectrum.

It's people who have significant support needs.

It's people who, we wouldn' even know that they're autistic when we meet them.

It's very dangerous.

And so when we have a, a child diagnosed with autism and we say, oh, they should be in therapy all day, they should be in behavior therapy all day.

What are they learning in therapy?

Are they learning how to be safe?

How are they learning to protect themselves?

Are they learning that they ca use their AAC device to say no, I don't like that Because the typically developing children are learning those things.

There are songs about it saying, please stop, I don't like that.

Our children—our autistic children are not necessarily learning that same thing.

They're learning that they must comply with the adults around them, and they don't get a choice.

And they will be punished if they don't listen and they will be rewarded if they do listen.

And that causes so much immense harm to girls.

It's really sad because that's a very positive message—message and one that all young people or, you know, people with various strains of autism should hear and it should be celebrated.

So there's no stigma attached to it anymore.

But thank you both for this enlightening discussion.

And that's it for this edition of To The Contrary.

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