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Common autism diagnosis questions: Answers from Dr. Melanie Hsu

Common autism diagnosis questions: Q&A with Dr. Melanie Hsu

Updated: September 19, 2023 · 8 Minute Read

Melanie Hsu, Ph.D.

Reviewed by:

Melanie Hsu, Ph.D.

Highlights

  • 1 in 44 individuals in the US have been diagnosed with autism. There are many reasons for this rise in diagnosis, including more frequent screenings for younger children and broadening the autistic diagnosis to better cover the entire spectrum.
  • Most parents may begin to notice potential signs of autism within their child’s first two years.
  • Research shows that one of the reasons why women are often diagnosed later than men is because women will often look at other people around them and copy what they do, even if they don’t understand why. This is known as masking.
  • For older adults, it might be difficult to get an autistic diagnosis because it can be harder to evaluate their development during childhood. But there are professionals who are specially trained in evaluating adults who think they are autistic.

Beaming Health’s co-founder Marissa Pittard sat down with autism expert Melanie Hsu, Ph.D. to talk about the science behind autism and the therapies that can help children thrive. They answered common questions about autism and chatted live with parents. In this clip, Dr. Hsu discusses all things diagnosis. Melanie discusses the recent CDC report that showed an increase in diagnosis, the lost generation, and the steps to obtaining a diagnosis later in life. Dr. Hsu also shares information on when a parent may notice the potential signs of autism and what steps a parent can take if they think their teen may be autistic. 

 

 

This transcript has been edited for length and clarity. You can find the full video conversation in the Beaming community. 

 

The CDC recently said that 1 in 44 children in the US have been diagnosed with autism. Why is there a rise in autism? 

Research seems to show that there are a few things that are leading to the rise in the number of diagnoses. 

 

Doctors understand autism better and are looking out for it.

 

Autism used to have a very narrow definition and there wasn't as much knowledge about the many different ways that autism can appear. Many people thought of more classic presentations or more severe presentations. As we studied the autism spectrum and how many different individuals can present, there was a better understanding of the fact that there are neurological underpinnings that can help us understand how this manifests in many different ways. So, part of it is that we are better able to look at the subtleties. 

 

People have also recognized how important getting early intervention and early diagnosis is. We screen basically everyone now. There are universal screenings that are mandatory in California, where the children are screened at every single well visit. As a result, there was a larger number of children that were being referred for evaluations and for services. And not just autism, but other developmental delays and language delays. 

 

The umbrella term of autism was widened because we understood that a lot of people could benefit from services and, especially in the United States, you need a diagnosis often in order to be able to get services.

 

We are also doing a better job training providers to listen to parents. In the past, parents would come to a provider and the provider would be like, ‘Well, but they're doing fine in school’  and wouldn't necessarily follow through with what the parent may have been concerned about. 

 

To summarize why there has been an increase in diagnosis:

  • Medical professionals understand autism better. 
  • Medical professionals are looking for it and testing for autism and other developmental and language delays.  
  • The definition of autism has evolved in recent years which means that an autism diagnosis covers more conditions to help more people get the services they need.

 

The lost generation: autistic adults who are diagnosed later in life

The advocacy of the lost generation is some of what's also led to us being more careful in taking people seriously and in looking more carefully. 

 

It is true that higher functioning autism (or someone who society assumes has lower support needs) was not as well understood until relatively recently. I'm sure we can all think of cases, even in our own lives, where looking back we're like, ‘Oh, this person probably would have benefited from help or services,’ but it was never identified. 

 

We are constantly learning more. Right now, a big focus is on women with autism, for example, who often are diagnosed significantly later.

 

Adults currently can get a diagnosis of autism and there are people who do assessments for individuals who think that they might have autism. You can find skilled ASD (autism spectrum disorder) assessors who have experience working with adults. 

 

The main thing is since it’s neurodevelopmental, we do want to be able to look at early development. This can be trickier for older adults whose parents, for example, may not be able to be interviewed by us or they may not have archival data. But whatever you have, a skilled clinician would be able to work with. 

 

It's not uncommon for me to see a child and then the parents say, ‘You know I've actually always wondered whether or not I have autism and that's something that I want to explore.’ 

 

And so we do refer families and adults to assessments as well.

 

Why are women diagnosed less frequently than men?

There's actually been a lot of study about that in the past couple of years and what the research shows is that women tend to be very good at what's called social camouflaging. They are very good at looking at other people and copying them even if they don't completely understand why. 

 

The difficulty then is that we often see a lot of exhaustion in women because they feel like they’re putting on a front at all times. This is part of it because they're hiding it a lot better. The median age for girls to be diagnosed with autism is actually 7 rather than with boys which is a lot earlier. 

 

So, as an assessor, I tend to see girls later. So not even 7 sometimes, more like 11 or 12, when they're starting middle school and those social skills are really starting to take off and they can't camouflage or fake it as much. Then they start having symptoms of anxiety or social withdrawal and people think that they're depressed or they're anxious. But when you take a closer look at what’s underlying it is the fact that they're working so much harder to try to get by.

 

How soon can parents tell that their child might be autistic?

Honestly, some parents can tell very early that something isn't quite right. Some family members say that from the date of birth, they’ve felt something was off. They just didn't feel as connected. 

 

Usually though, you start realizing that something may not be quite right with development in the first two years or so. Some time in between there. And it's often because of missed milestones. Although some families do report that they notice things like not making eye contact or those kinds of things as well. 

 

What if you think your teen may be autistic? 

The Situation: Someone's son is 16 years old and he's never had many friends. When he was younger, he would cry in the park. He still doesn't have a ton of friends and struggles a bit with expressing feelings and struggles with writing. Something has struck his mom that this is not super typical. Is there anything she can do to find out? What would you recommend here? 

 

Dr. Hsu’s Answer: As a person who does assessments, I'm always biased to suggesting assessments. A comprehensive assessment, especially for teenagers, can be really helpful because a lot of what you've described can be due to many different things. 

 

For example, there could be some anxiety. There could be some sensory issues that are getting in the way. There could be some speech and language issues, especially because language is very abstract. But the most abstract thing we can talk about other than time is emotions. Being able to understand what you're feeling and then being able to put them into words that are understandable for another person is actually quite hard. 

 

Sometimes people are like, ‘But he met all his language milestones and he was able to, you know, do this and this. I don't think he has a language disorder.’ But then when we look at an assessment and we're like, ‘Actually, he has these areas of difficulty that may not have been readily available or readily visible.’ 

 

So with a profile that you just described, with your 16-year-old, what I would suggest is to find someone who is able to do a comprehensive assessment to rule out an emotional piece, language piece, as well as an academic piece. Because writing could also be a disorder of written expression, for example, a learning disorder. 

 

The main thing is that we want your son to be able to feel good about himself and be able to express himself. And understanding where some of these things may be coming from can help him understand how to advocate for himself.

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