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Ask an expert: Diagnosis and disclosure

Natalie is a Speech and Language Therapist, based in the UK, with over 12 years of experience. She has kindly agreed to share her personal reflections, having worked with a wide range of autistic people and their families. We spoke about diagnosis, disclosure, and how to handle communication and socialising. This is the first of two articles covering that conversation. Here is a link to the second.

Through our recent surveys (sign up for the newsletter at the bottom of this page if you want to receive links!), we've been getting requests for new topics. Most of those relate to communication, disclosure, and reasons for late diagnosis. Enter... Natalie! I am so grateful to her for sharing her expertise and hope it will be useful for you too.

This is one of two articles covering our conversation. Here, we'll talk about diagnosis and disclosure. The second article is about socialising and communication.


What is your job? What is your connection to autism?

I am a Speech and Language Therapist. Currently, I'm working with teenagers with a range of communication difficulties, many of whom are autistic.

Tell us a few things about yourself! If you had ten minutes to yourself to unwind, what would you do? What band were you obsessed with as a kid?

With ten minutes to myself... I would get in my bed, under a duvet, and watch something really cheesy like Made in Chelsea or Married at First Sight. And sometimes that ten minutes would turn into an hour. As a kid, I was completely obsessed with Boyzone!


Why do some people not get diagnosed until later in life?

There are a few reasons I tend to see. For one, if as a very young child your language is developing fine, there's generally nothing to raise major concerns at that point. Speech delay is one of the things people tend to think of when they think of autism in children, so if that isn't present, it can be easily missed in those very early stages.

Social demands in early primary or nursery are then relatively low. It might not be until social situations become more complex in late primary or in secondary school that social difficulties start to have more of an impact on daily functioning.

You have to think about why people in contact with a child would make a referral too. In general, if you’re bright and managing well in school, then schools don’t raise concerns or even notice. I think parents expect that if there’s a problem then the school or nursery would pick up on it and say something, as they are seen as the experts. But if there’s a low impact on academic outcomes or social functioning, it’s unlikely to be picked up early.

One other big factor is that quite often other people in the family may have similar traits. And they have grown up in a generation where autism was not recognised or diagnosed as commonly, especially in women. So, parents may not perceive how their child is functioning as non-typical... Their child is just like them!


Are there particular signs that people often miss?

Often there are really subtle differences in early play. I see young autistic girls playing with dolls in a way that on the surface looks like imaginative play. But, look closer, and they are primarily dressing them up, re-enacting the same scenario over and over, or re-enacting something from a TV show. So, it looks like "typical" imaginative play, but it isn't.

Autistic children might be quite happy playing by themselves, but won’t involve others. Or, if they do involve others, they need to take a very specific role in that play. Often leading it, i.e. in a role where they have more control over what is going to happen. And they might find it quite difficult if that role is swapped.

I've also observed that girls are often (not always, but more often than boys) more socially motivated, i.e. wanting to join in and fit in with their peers. So they seem to do better at imitating neurotypical behaviours and are therefore masking from a very young age.

I think then what happens for those autistic children (often girls) is quite predictable in a way. As social situations get more complex, the stress and anxiety build up and up. This can present as a whole range of mental health issues to do with control and/or self-esteem e.g. eating disorders, social anxiety, panic attacks, school refusal, "challenging” behaviours, substance abuse, depression. That's when schools or guardians might start to think intervention is needed, and potentially think about autism. Diagnosis is only usually considered when there’s a really obvious outward impact on the individual e.g. at school or in social situations.


Is it more common to miss those signs in girls? Why?

I think so. We’re getting better at diagnosing girls in adolescence, but in the early stages, I tend to see more boys presenting with a language delay than girls, which is often what would trigger a diagnosis at a very young age.

Even once you get to the point of diagnosis, some of the autism assessment tools we use e.g. ADOS can be less sensitive to picking up girls. You need experience with that group to be able to use it effectively.

Tell me a bit more about your experience with ADOS?

ADOS is an observation schedule. You set up a situation and give the person activities. You ask them certain questions. You write down what you observe, and what they say. You use all of that information to score the assessment.

Because observation is potentially so subjective, it really matters how experienced you are in observing. In my experience, it’s usually two people doing it, which can help. But since girls typically mask more, you do need someone quite experienced with observing that group, as it can be easy to miss the subtle differences (e.g. the play example I mentioned before).


Is early diagnosis getting better or worse?

I think it’s getting better. There’s more screening of children (in my area at least) by health visitors at 27-30 months. So, kids with a clear language delay get referred to speech therapy quite early, and that can start the ball rolling.

Where I work we also now have more Speech Therapists and Occupational Therapists embedded in Mental Health teams, which is great. That gives a wider professional lens and in my experience is helping with diagnosing girls in particular at an earlier stage.

There is more training about autism now too. Overall it is talked about a lot more than it used to be. Thanks to this increased awareness, professionals are starting to recognise that, for so many people referred to mental health services, the underlying factor that's driven them there is autism. Autism (especially if undiagnosed) is going to make you anxious... and that anxiety will manifest itself in different ways. It might be an eating disorder, or OCD-type behaviours, all sorts of things. It might also be that the lack of social support network caused by having difficulties socialising has left someone more vulnerable to depression or self-destructive behaviours. Whatever the case, these things start off the process with mental health services, and in my experience, often we end up talking about autism.


What is your experience of how families handle an autism diagnosis?

For most people this is positive. Often families have a bit of a light bulb moment, and it’s really helpful.

Sometimes you get someone in the family who has agreed to an assessment in order to “rule out” autism... so then they might disagree with the outcome. As professionals, we need to be really careful to prepare families for assessments, particularly in those cases.

But most people do say it’s been helpful, "now I really get it", "I recognise traits in myself", and so on. In that sense, it can help the service user but also their family.


What advice would you give about how to tell friends or family you are autistic?

This is a very individual thing. You tell who you feel comfortable with, when you feel comfortable doing it, and that will look different for everyone.

I worked with one boy who texted his whole family and told them about his diagnosis. He got such a lovely positive response from everybody that it really helped him process it. But I know that wouldn’t work for everyone, because every family is different.

If you are planning to tell someone, I think it’s helpful to be able to explain two things: (1) how it impacts you, and (2) what you need. Even if what you need at that stage is just to talk to them about it while you figure things out!

When I talk to young people about autism, I try to explain: neurodiversity i.e. we are all different, the areas where autism can give you real strengths, famous people who are autistic and are likely successful because of that, but also the things that might be really challenging. The challenges are the reason they're in front of me in the first place, and I don't want to minimise that.

On a personal level, I have a friend who is autistic, and find it super helpful when she tells me exactly what she needs. None of it is unreasonable or a big deal for anyone else, but it makes a big difference to her and how much socialising she can do.


If you'd like to read the second part of this, where we cover socialising and communication, you can find it here.

Thanks so much for sharing your expertise with us, Natalie!

Note, in case you are wondering: Natalie has an active base of service users in her local authority, so has chosen not to include a real photo of herself. We hope you can understand, and please forgive the generic image :)

Lauren x


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