Autism FAQ

This page is designed as a first port of call for anybody wanting to learn more about autism. My answers will not be exhaustive but I aim to be succinct in outlying the most common questions surrounding autism today. The wording of the questions is also in line with what people are asking and I will clarify usage. I will also use the final "question" to dispel a few autism myths that persist.

Please get in touch if you would like to know more or if you want to book me as a speaker.

The short answer: Autism is a lifelong, developmental condition that affects the way a person communicates and relates to other people around them.

This is often a complex question as autism comes as a spectrum - it therefore affects everybody differently. I like to say that being autistic is one component of a person's identity.

Autism is an intrinsic part of who we are, you can't separate autism from a person in the same way you can't separate the flour from a cake. There’s a saying in our community to reflect this: “Once you’ve met one autistic person, you’ve met one autistic person”. Although I prefer the United Nation's version "If you've met on autistic person, you need to get out more!"

The CDC, based in the USA, says autism affects 1 in 36 children (2.76%). It is currently 3.8 times more common among boys than girls. [1] The most common figure currently used in the UK is 1 in 100, which has been in use since 2009; however the Autism Research Centre in Cambridge suggests 1 in 57 (1.76%) [2].

With increasing awareness and diagnoses being conducted, the autism prevalence figure is at its highest today and continues to increase.

Sources:

• 1) www.cdc.gov/autism/data-research/?CDC_AAref_Val=https://www.cdc.gov/ncbddd/autism/data.html

• 2) www.cam.ac.uk/research/news/autism-rates-have-increased-and-show-differences-in-ethnic-minorities-and-links-to-social

I need to say at this point that the word “symptoms” makes it sound like we have a medical condition. While this is technically true, autistic people mostly prefer to use softer and more personal terms like “characteristics” or “traits”. These traits aren’t obvious in every autistic person and they can vary greatly in intensity and how they affect us.

• Exceptional attention to detail

• Logical, literal and binary thinking

• Very precise

• Special, intense or limited interests (exact usage varies)

• Difficulty interacting with and relating to other people

• Sensory difficulties or sensitivities

Autism affects everybody differently. Therefore this list could be much longer but I’ve just listed a few of the most common traits.

Asperger’s Syndrome (often abbreviated Asperger's or AS) is a form of autism where there is no delayed language development. As of 2013, when the American Psychiatric Association published the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V or DSM-5), Asperger's is no longer being officially diagnosed. However people with a diagnosis of Asperger’s syndrome will keep it and not see it replaced. The DSM-5 equivalent is “ASD Level 1 without intellectual or language impairment”. Despite this the term Asperger’s syndrome is likely to stay in use for the foreseeable future.

The first thing to do is to book an appointment with your GP to get a referral immediately. I'm deliberately putting urgency on this because it’s common for the diagnostic process, start to finish, to take over 2 years. More information is also available through the Right to Choose scheme.

A diagnosis can take a long time to complete - in the UK it’s common to take over 2 years from initial referral to diagnosis. In America, and other places without free healthcare, it can also cost several thousand dollars to go through the diagnostic process. Self-diagnosis, when people say they are neurodivergent but have no formal diagnosis, is increasingly more common. The most common reasons for self diagnosis are because of the referral times or the financial cost. Some people may not want a formal diagnostic label that they feel is a potential hook for further bullying or stigma. I believe that self diagnosis should not be dismissed as there are few false positives (people self diagnosing when they in fact are not.)

The short answer: you can’t. Autism is an invisible condition so you can’t tell if somebody is autistic just by looking at or observing them. Some people say you can learn the common behaviours of autistic people but the only way to know for sure is for them to get a diagnosis.

Masking (or camouflaging) is when autistic people imitate or mimic non-autistic behaviour. This is particularly common in autistic girls and women and is one of the key reasons why autism is under-diagnosed in females (the other is that the diagnostic criteria overwhelmingly favour the white, male population). This takes up a lot of mental effort and isn’t always very effective. This can be very stressful for the individual and even lead to autistic burnout (see question below).

Anybody can experience burnout, which is caused by intense and prolonged periods of high stress levels. It affects as many as 50% of people in work [3]. Burnout leaves people feeling very low on energy and motivation for a sustained period of time. Autistic people are more likely to get stressed over everyday situations, mostly due to social and sensory difficulties that don’t bother other people as much. This means burnouts are more common in the autistic population and this over-stimulation can mean it takes longer for us to recover.

3) https://thriveglobal.com/stories/2019-burnout-quick-stats-3-things-to-continue-in-2020/ 

Autistic people have the potential to become world experts in their field of interest. We also have numerous abilities and talents that, in the right context, can exceed those of our neurotypical counterparts. However this can only happen once we are accepted for who we are and better understood. Being kind and understanding towards others can get you a long way in life. Society is generally less comfortable with people that are different; however it is these differences, often talked about through cognitive diversity (or neurodiversity), that allows new and wonderful ideas to come about.

I prefer the term "autism acceptance" to "autism awareness". According to the NAS, over 99% of people have heard of autism (which is often conflated with "awareness").

In my opinion awareness is not good enough. I am aware of quantum mechanics, but that doesn't mean I know how to use the equations or solve complex quantum mechanical problems! Thus we need acceptance and to embrace autistic people's abilities and talents while supporting their needs.

For the final question (even though it’s technically a few questions stringed together) I will quickly dispel a few controversial myths surrounding autism.

• Is there a cure for autism? NO! This is controversial because autism is an intrinsic part of who a person is. It’s a bit like asking if there’s a cure to being British - it takes more than just not drinking tea! The best thing you can do to improve the quality of our lives is early intervention - the sooner autistic people receive the support we need the better.

• Do vaccines cause autism? NO! The controversial paper that suggested this was published over 20 years ago and has been disregarded many times since.

• Do autistic people lack empathy? NO! We most definitely do have empathy, sometimes a lot of it - it just comes in a different “flavour” to yours. We may be less able to recognise empathy or express it, but one thing we can't do is fake it. Partly because of our more binary way of thinking, we are more likely to either care about something a lot or not at all.

I hope this FAQ page proves useful to you and has answered some of your initial questions about autism. If you'd like to know more please contact me or book me to speak for you.