The Trouble With Asperger’s

Back when my son had his autism diagnosis, the term “Asperger’s” was in common usage. The term conjures up the idea of a little professor. An Asperger’s child has specific and narrow interests and talks non-stop about their favourite subject. Such a child may have a poor understanding of social cues and nonverbal communication. Despite this, they have normal intelligence and language abilities.

Today, the term has faded out of fashion; replaced by the umbrella-term HFA, or High Functioning Autism. So what happened to the term Asperger’s and why don’t we seem to hear it anymore?

The DSM-5

In 2013, the Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders was released by the American Psychiatric Association. Before it’s release, there were many terms used to describe types of autism with different traits. These could appear confusing. The manual simplified things by using the term ASD to cover all types of autism. It then created three levels to show the severity of symptoms.

Level 1 is the mildest form of autism, the type formerly known as Asperger’s. Individuals with level 1 autism may have restricted, repetitive behaviours and problems with organisation and planning. It is understood that these individuals will need some support.

In the UK, the DSM-5 is not the most commonly used manual, so use of the term “Asperger’s” continued to last a little longer here as popularity died out in the US. It does seem, however, that the UK is slowly following suit, although it has been promised that nobody with an Asperger’s diagnosis will “lose” their diagnosis because of changes in the manual. This is because some individuals view the name as part of their identity. The term also still remains in use in the ICD-10, the official medical classification list of the World Health Organisation.

Backlash Against Asperger

Public opinion has changed after new discoveries were made about Hans Asperger, the man whom the condition is named after.

It is believed that he collaborated with Nazis by referring children to a notorious euthanasia clinic during World War II.

He was not a member of the Nazi Party, but newly discovered documents state that he sent patients to the Am Spiegelgrund clinic in Vienna, where a total of 789 children were put to death.

Because of these disturbing discoveries, many who formerly used the term “Asperger’s” to describe their autism have started to distance themselves from the name and any association with it.

I’d love to know what my blog readers think. Do you still use the term “Asperger’s” to describe High Functioning Autism?

Autism in Girls

Autism has always seemed to be a boy thing. Ask most people what they imagine when they think of an autistic person. The chances are that the mental image conjured up would be male. Indeed, that’s not surprising, as the majority of people diagnosed with autism are boys. Hans Asperger started studying autistic children in the 1940s. He did not think that girls were affected by the condition. He eventually changed his mind at a later point.

There is no official figure on the boy/girl ratio. At this time of writing, official estimates vary between 2:1 and 16:1.

But are there more autistic boys than girls? Or are girls just harder to diagnose?

A big part of the problem comes with the way that young boys and girls differ in their social patterns. A young autistic boy may display behaviours more commonly thought of as “classically autistic.” They might play alone and struggle with social cues and eye contact. A young autistic girl, however, may have a small friendship group. Although her behaviour may be passive, she is much better as imitating others to fit in. This behaviour is known as masking.

Problems may only be noticed when the girl is older, often in the teenage years. This when a lot of autistic girls finally get a diagnosis. There is generally a lot more awareness about female autism now than there was a few years ago. Practitioners are trained to spot the more subtle signs of female autism when considering a diagnosis.

Some Signs of Female Autism

1. Girls with autism may have an obsessive interest about a particular topic. This could be a certain movie, game or toy. A girl may spend a lot of time reading or researching about their subject of interest. She might only engage with others socially when talking about it. Autistic girls can be quiet and withdrawn when others talk about a different subject that doesn’t interest them.

2. Autistic girls may have very high anxiety levels, resulting in age-inappropriate meltdowns that can seem like tantrums. They may cry, shout and destroy objects as they feel completely overwhelmed.

3. Although they may have a friendship group, fall-outs can be common as an autistic girl may fail to understand social cues and nuances in speech.

4. Teachers may describe a girl as “quiet” or “shy” during classroom discussions. Whilst this is obviously not always a sign that someone is autistic, this trait is common in autistic girls.

5. Sensory issues can be common in autistic girls. Noises may be loud and overwhelming and they may not like being in crowded areas. Clothes may feel scratchy and uncomfortable and they may be picky eaters.

Getting Help

If you think your daughter or someone you know has autism, it is important to seek a diagnosis in order to get the appropriate help. Discussing concerns with a family doctor is the first stepping stone towards diagnosis.

Diagnostic pathways vary, but it is likely that a girl will be referred to CAMHS or another specialist service where they may undergo certain tests, interviews and observations in order to ascertain whether the issue is autism or another underlying condition. Practitioners may also interview  parents and school staff to get a picture of how the patient behaves in certain situations and to get a complete family history.

If an autism diagnosis is made, it is likely that the parents will receive more information on the condition. Most areas run parent courses about autism. The girl may be eligible for extra help in school and the family may be able to claim certain government benefits like DLA and Carer’s allowance.

Conclusion: Autism in Girls

Practitioners now understand that the diagnostic criteria used to recognise autism in boys should not be used in cases of female autism, which can present very differently.

As we learn more about female autism and how it affects individuals, better care will result for those affected. Hopefully less children will “fall through the net.” Families need to feel supported and listened to. No girl with autism should be denied the help she needs.

How Do You Feel When Your Child Gets an Autism Diagnosis?

I’ll never forget the conversation we had with the Paedeatrician before our son’s autism diagnosis. She seemed quite wary about the process, pointing out that many parents don’t want an official label for their child. Many find the whole thing too overwhelming and upsetting. Is an autism diagnosis really the end of the world?

Our Experience With Autism Diagnosis

This couldn’t have been further from how I personally felt. We’d known our child was different from about age 3 and taken our concerns to the health visitor. She performed extensive tests. She said that although our son had extremely high level speech and language skills, he’d performed very poorly in other areas. He only had the cognitive skills of an 8 month old baby.

The years that followed were a blur of various doctor’s appointments and therapy blocks. None of these seemed to get us any closer to understanding what was affecting our son’s behaviour.

On the outside, he looked like any other child. People would be puzzled by his behaviour in public places, which could sometimes be extreme. We’d apologise, saying that our son had “special needs,” but this seemed a hollow and superficial label that didn’t really explain his specific condition.

“Your Son Has Autism”

So when, after four years of limbo, we finally got an autism diagnosis for our son, I couldn’t have been happier. Now I could understand why he behaved the way he did and I could actually do some research, learn about the condition and connect with others in similar circumstances. By learning about autism, I could find out what triggered certain behaviours and help to keep my son as happy and calm as possible.

It also became a lot easier to explain to others about my son’s needs, as most people have a basic idea about what autism is, thanks to increased exposure in the media over the last few years. He’d get more targeted help in school and the staff would be able to better understand his sensory and social difficulties in the light of his diagnosis.

 Autism Diagnosis Doesn’t Change Who Your Child Is

A child post-diagnosis is still the same person. Nothing has really changed. We just understand them better.

I’ve heard people say that when they had a diagnosis for their child, they went through some sort of grieving process over the life that their child will never have. Personally I don’t feel this way. Autism isn’t a death sentence. An autistic person just has a different way of processing and viewing the world. In fact,  many autistic people have learned to embrace their gifts and make a successful career out of their special interests. Indeed, it’s been said that most of the employees in Silicon Valley are “on the spectrum.”

As parents, we can’t plan our kids’ lives for them. We just have to help them have the best life that they can by supporting them in every way possible. An autism diagnosis can help us to do that by giving us better understanding of their needs.

 Autism Diagnosis from the Child’s Point of View

A few months ago, another one of my children was diagnosed with autism in their teens. They said to me that they were happy to get the diagnosis because they had always felt different and never understood why. The diagnosis was met with a positive response, a feeling of relief and a big happy smile.

In Conclusion

Your child is still your child. Information is power. Use the diagnosis as a stepping stone to learn more about autism and connect with others. Most importantly, use the things you learn to create a happy environment for your child where they can feel safe and grow as a person.

Welcome to My New Autism Blog!

Hi and welcome to my new blog about all things autism!

Let me introduce myself…

I’m a mum of three children. Two of my children have been diagnosed with autism. I wanted to give my children their privacy, so this blog isn’t about them. It is about the the huge learning curve that accompanies an autism diagnosis. I’ve learned a lot over the last few years, and continue to do so.

I started writing about autism on Blogger a few years ago at I’ve left it up and running, so feel free to dip in and read some of my older blogposts. I enjoy writing, so an autism blog is the perfect platform for me to raise awareness. This new autism blog is a brand new adventure for me and I hope that you will enjoy the journey too.