That’s a big statement isn’t it – particularly from someone who doesn’t have Autism Spectrum Disorder.

Do I even have any authority to talk about it?

Maybe not, and I certainly don’t know all the fancy terms.

What I do have is 23 years of experience as a mum to an amazing, brave, resilient, young lady, who has found both the beauty and challenges of ASD. The current stats in the USA reveal 1 in 44 children are diagnosed with Autism Spectrum Disorder (2018), so I am sharing what I wish others knew about what I have learned about Autism Spectrum Disorder.

The chances are that you shall meet a young one with ASD and it will help enormously if you are able understand a little about them.

1. Autism Spectrum Disorder is just that –

a ‘spectrum’

It affects each person in a different way, with varying degrees of strengths and challenges. Not every person with ASD is a mathematical genius like that played by Dustin Hoffman in Rainman!

The spectrum covers an enormous range from low functioning to the highest functioning ASD, such as Asperger’s (though no longer referred to as Asperger’s). Anywhere from low to high is covered under the spectrum.

Some of our most brilliant people on this earth have Asperger’s. Each person on the spectrum will be very individual and likely impacted very differently.

2. ASD does not mean that the person is intellectually impaired.

Autism Spectrum Disorder is a developmental disorder that affects a person’s ability to interpret social and emotional context in situations. They may have communication and behavioural challenges.

It is true that with ASD, the person may be afflicted by other conditions such as anxiety, language deficits or intellectual impairment (as examples). They may have other comorbid conditions alongside Autism.

This may exacerbate the difficulties they face. A mum shared with me once that her boy was undertaking some therapy. Her boy was non-verbal and practicing counting money. His therapist noticed that his behaviour was unregulated throughout the session, the young man throwing the money at the therapist. Another therapist present observed and noted that perhaps his therapist should make the maths problems much harder – maybe his behaviour was related to boredom?

The young boy squealed with delight when the problems became much more relevant to his ability.

Please don’t equate autism automatically with intellectual impairment, as that is not necessarily the case.

3. Sensory disturbance for people with ASD is real.

What does that mean exactly? – it could be related to vision, smell, hearing, touch or taste…..one or all of these heightened to such a great degree it is disturbing or potentially even extremely painful.

Let me give you some examples.

A young boy I have known, politely asked his teacher during class to please move the girl seated next to him. When asked why, he matter of factly stated – ‘she smells’ and her close proximity made him feel ill in the stomach. People on the spectrum are often very truthful, he was just being honest.

The teacher ignored his honest feedback and the result? – he vomited all over the girl. She was most upset and so was he, as the teacher hadn’t taken his plea to relocate his peer seriously!

Another scenario – a young girl I knew seemed extremely agitated during class and when the teacher asked what the issue was – she responded she needed the window to be closed due to the extreme noise. She was non-verbal and communicated this to her teacher using facilitated communication.

The teacher peeked her head out the window and commented that there wasn’t any noise emitting from the school grounds. The young girl became extremely upset – using her facilitated communication to explain to her teacher –

‘Why do you even ask me, if you really don’t believe me anyway!!’

The lesson in here for any neurotypical – is that just because we don’t experience these extreme sensory disturbances – doesn’t mean it is not real for someone with ASD.

If you want really to understand the challenges; listen and show empathy.

4. Social Settings can be hard to navigate for someone with ASD.

Social interaction may come naturally for some, but for someone with ASD, an interaction to place an order for food or get on a bus may be incredibly hard and exhausting!

Social settings can be a huge source of stress and for some on the spectrum, cause physical discomfort, if anxiety or panic attacks are also experienced. Some on the spectrum describe a social engagement as excruciating.

5. A person does not grow out of autism spectrum disorder! There is no cure!

ASD is a lifelong condition. For some on the spectrum, they may be able to learn skills to help manage day to day activities, tasks and be able to work. Some may need a lot of support, whilst others need less.

Routine is particularly important. This helps to maintain a sense of stability and predictability.

You may find for some on the spectrum that they appear to have a meltdown around small changes in routine or rituals. Symptoms may appear to lessen or be more manageable over time with the right supportive learning environment, particularly if receiving early intervention.

However, there is no cure. Many on the spectrum describe their learned ability to ‘mask’ the symptoms and have become extremely adept at hiding their challenges from others.

Think about that for just a moment.

This makes them quite amazing people.

6. Eye contact is really hard!

Seems very simple and many people are confused as to why this is so hard for someone with autism.

My daughter has explained to me that it hurts for her to maintain eye contact. We have explored lots of options as to whether she could look instead to my forehead and not engage in full eye contact or achieve fleeting eye contact, but even that has proved very difficult for her.

Some on the spectrum may be able to periodically look your way or look at your forehead to give the impression of meeting basic social etiquette.

Even for those who can master this, it can be challenging for them to work out how long they should be making eye contact for before dropping eye contact.

7. A person with ASD is not deaf or hard of hearing

My daughter often tells me that some people start speaking louder or talk down to her as if she has a hearing problem.

Whilst for some people on the spectrum, they may have some language deficits, however they are not deaf and are able to hear you.

This is where you can help. What you may need to change, is your language in terms of being supportive. Perhaps repeating or rephrasing your wording so they have an opportunity to understand what has been said.

8. Echolalia is common in young children with autism

This was more obvious when my daughter was young, however I still notice that she does this on occasion. Echolalia is known as parrot speech or echoing.

I would ask my daughter a questions such as ‘How old are you?’ and she would simply repeat – ‘How old are you?’

It is called being meaning deaf – Little or no comprehension to the words asked.

Even today, she will on occasion repeat my words, my values, my beliefs without formulating an opinion of her own.

9. Stimming helps to calm the nervous system

I watched Funniest home videos one evening and a video had been submitted whereby a young boy was flapping/flailing his hands about in seeming excitement about a new toy. The audience roared laughing and my heart sunk as the vast majority wouldn’t know that they were witnessing a young boy with autism that was stimming.

I wondered did the parents even know he had autism. Did they know he needed support?

Stimming is self-stimulating behaviour, and I guess we all engage in it to some degree. However, for someone with ASD, self-stimulatory behaviours are a way to help manage their emotions and cope with overwhelming situations.

Behaviours may be more prominent such as body rocking, head banging, flapping hands, spinning, contortion of hand movements or less obvious such as drumming fingers, fiddling or clicking pens.

So the next time you are in the grocery store and a young one is furiously rearranging the shelves to put everything in ‘order’ it may just be a sign of stimming.

Stimming might be triggered by boredom, stress, joy, excitement, or anxiety.

In any of these circumstances, it helps to calm their nervous system.

10. Being alone doesn’t mean a wish to be alone

Whilst many on the spectrum can and often spend a lot of time on their own, people are often surprised that it is not always their desire. I am often intrigued about the confusion around this. Many people hold the assumption that a person on the spectrum wishes to be alone.

Social situations can prove difficult and extremely overwhelming. Even being with a crowd of familiar people such as being with family, can prove socially exhausting to someone on the spectrum.

Seeking to opt out of these situations doesn’t mean that a person with ASD wants to be alone, simply a strategy to manage with the overwhelm.

Loneliness affects people on the spectrum too. It affects their mental health in the same way that it does others, leading to risk of depression and anxiety. Many on the spectrum struggle with both depression and anxiety. The lack of social connection simply adds to the isolation.

I have met many wonderful young people on the spectrum, who would love to be less lonely, it’s just that social interaction presents the greater challenge. It is particularly difficult for women on the spectrum as there is a more expectation for women in terms of social connection.

11. Uniqueness

I could say here that many on the spectrum are eccentric, which maybe they are, but the truth is they are truly unique. What an amazing quality to have. I wish that more businesses and people in the community were able to recognise their wonderful traits.

Many on the spectrum do find it difficult to find meaningful work, yet they have traits that would make them extremely valuable employees –

· being honest,

· reliable,

· loyal,

· strong work ethics,

· lovers of routine and

· quite love autonomy.

These traits are often overlooked and so to, the benefits and team dynamics in terms of diversity.

12. Some people on the spectrum do not like to be labelled ‘autistic’

ASD is a developmental disorder. Simply put, it means they think differently than others not on the spectrum.

My daughter does not like the label of being ‘autistic’. There is a lot of debate about labels, some referencing to a ‘person with autism’, others referencing to ‘autistic’.

I guess what I am saying here is to be mindful of the individual. For my daughter, she is Chelsea –

and she would prefer that you don’t refer to her condition/disability/disorder or whatever.

She advocates education about autism to help others understand, but her condition doesn’t define who she is. She is our amazingly brave, strong, resilient daughter, who takes the enormous challenges of ASD in her stride every single day.

I do wish more people knew about autism spectrum disorder and hoping I have shared some insights for you.

There is a lot we can all learn from people on the spectrum. If we can understand more about how autism affects a how a person thinks, feels, interacts with others, and experiences their environment, it will help us to understand a lot more.

Would love to hear your experiences, please leave a comment.

Let’s learn together.