10 Things You Need to Know About Autism

There are many things you might need to know about autism. I could give you a hundred pieces of research or a year’s worth of ‘day-in-the-life’ posts. Truth is, until you are faced with it, it is hard to know what you don’t know.

Things you need to know about autism

There are a few things we have learned along the way that we think everyone needs to know about autism.

This list is about Aysh, but it is also about your neighbour, your friend’s daughter or your grandchild.

Autism is different for everyone, but there are few things that we can all agree on.

1. Autism is for life

When Aysh was younger, I was often asked if he would grow out of autism; if he would ‘catch up’ and learn to talk and do all of the things his older brother could do.

I was working in disability at the time, so I knew what the specialists were telling other parents. Autism does not go away. Children do not grow out of it.

Children with autism become adults with autism.

Children can learn new skills. Some children learn improved communication skills or social skills. For some children they can be explicitly taught how to interact appropriately around other people, and therefore they might not stand out so much as adults.

But those skills are hard work. And often a daily struggle, even in adulthood.

For Aysh, this is an ongoing battle. He has come so far, but still has so far to go. He does not have the skills he will have for adulthood – yet. But we are slowly moving him closer.

2. People with autism have empathy

There seems to be a school of thought that children (and adults) with autism lack empathy for the emotions of others. But this is not the case.

People with autism show emotions differently

It is true that people with autism often show emotions differently. There has been increasingly research over recent years about how children with autism understand and respond to their own, and the emotions of others.

Things you need to know about autismAysh seems to over-empathise with the emotions of others. Purely based on my own theory, he seems to “take on” other people’s emotions.

For example if he sees another person crying, it is almost as if he himself is sad. This becomes overwhelming for him, and often results in a strong behaviour response (eg yelling or headbanging).

Social communication

Some of the research leads to challenges in social communication. Perhaps it is because people with autism (especially those with communication difficulties like Aysh) just do not know how to express empathy. Perhaps they do care about the emotions of others but don’t have the social skills and communication to tell you that.

To understand more about Aysh’s communication, check out this post.

3. People with autism can have quality friendships.

Like empathy, the idea of friendships is one most of us probably assumes comes naturally. If we watch young kids we seem them pick out other individuals to play with and share experiences. As we get older, our definitions of friendships change, but essentially we choose another individual to hang out with and share interests with, and we call them a friend.

Connection and relationships

Connection – and in turn friendship – is a human desire. So it makes sense that people with autism would also want to make connections and develop friendships. But the ‘road block’ comes when they simply don’t know how.

Building friendships

Many years ago I attended a workshop run by Tony Attwood. At the time he was doing a lot of work in the area of building social friendships for young adolescents with Aspergers (a type of autism). He talked about needing to explicitly teach what to say and how to act to initiate a conversation, and build a friendship.

Aysh’s friendships look even more foreign than this. He is definitely more comfortable building connections with others with disability, but perhaps that is because that is where he has spent all of his schooling.

Aysh & his friend Jake

Things you need to know about autism

Aysh had an interesting connection with a young boy (Jake*) at school a couple of years ago. Jake was in a wheelchair and had no speech. He also had a reputation for pinching others – hard! Aysh had grown up with Jake so he was familiar with him. I watched Aysh one day edge closer and closer to Jake’s wheelchair and reach out his arm with a cheeky grin on his face.

Jake saw the arm, grabbed it and proceeded to pinch the skin on Aysh’s forearm as hard as he could. Aysh began shrieking. Adults rushed to free his arm and move Aysh away. 30 seconds later, Aysh returned and repeated the same thing.

Jake was his friend. Although their interaction seemed aggressive and extreme, it was a connection. But perhaps one that needed a little more guidance to be socially appropriate!

*names have been changed for privacy reasons

4. Not all people with autism have savant skills

Savant skills are those that are considered ‘outstanding skills above an individual’s general level of ability and above the population norm’. Thanks to movies like Rain Main, there used to be this idea that all people with autism have some kind of special skill.

Truth is, about 10% of people with autism actually have skills that would be considered savant level.

Does Aysh have savant skills?

We think Aysh is pretty amazing but he is not a savant. He has strong skills in particular areas, including literacy and music. He has skills that amaze people every day. But when compared with his peers, he isn’t above the population norm.

He does have some natural talent – especially in music – but I suspect that is more to do with his passion and interest in it. After all he spends a lot of his spare time watching You Tube clips and playing around on Garage Band. Seems only logical it would come naturally to him.

5. Autism is not caused by vaccinations

Back in 1990’s a research group published a study claiming that autism was caused by vaccinations, in particular the MMR (measles, mumps, rubella) vaccine. They later retracted the findings after additional research proved their theory to be false.

Thiomersal and mercury in vaccines

But there are still lots of people who believe this is the case, even though many large-scale studies since the 90’s have proven otherwise. Interestingly the ingredient that is supposedly linked to autism (thiomersal and mercury) is not included in the MMR vaccine in Australia.

Things you need to know about autismAysh was diagnosed in 2004. It was the same year the original research group came out publicly to claim that their results were false.

He had received his vaccinations on schedule, but we didn’t notice the changes then.

For us, autism was there from birth, before any vaccinations even happened.

For further discussion about our diagnosis experience, check out this post.

Vaccinations and autism

On the surface it doesn’t matter what causes autism but when we explore it further, there are 2 reasons why we should worry about this myth:
1) People may stop vaccinating their children. The conditions vaccines prevent can be more devastating than autism, including death.
2) Parents may seek ineffective, and sometimes dangerous, treatments that are based on removing the chemicals from their child’s body.

The bottom line is vaccinations do not cause autism, but they do save lives.

6. People with autism can have a great sense of humour

Anyone who has ever met Aysh would know that this is true! Although his humour is not always in-line with everyone else’s, he definitely has a great sense of humour.

Things you need to know about autismSometimes he makes us laugh without meaning to, like when he takes things too literally or misinterprets an instruction. But often he is telling jokes, singing silly songs or just generally being playful.

Aysh’s personality is one of the reasons why people enjoy working with him and spending time with him – peers and adults alike.

Research

It is interesting to read the research in this area, exploring whether people with autism understand the humour of others. One study compared humour in over 300 high school aged students – half with autism and half without. The results of the study showed that students with autism did not comprehend the jokes as well as their peers, but they felt greater enjoyment when reading nonsense jokes.

Perhaps that explains the interest in books like Dr Seuss that require very little comprehension but contain enjoyable nonsense jokes.

7. People with autism are no more violent than others

Violence is a tricky one. There have been a number of media reports (especially in the US) of individuals with autism who have acted violently, including school shootings. The individual’s diagnosis forms part of the story, and naturally as humans people make the connection between autism and violence.

People with autism are more likely to be the victim, than the perpetrator.

But this is not the case generally. Sadly the research tends to suggest that people with autism are more likely to be the victim of violence, than the perpetrator.

Self-harm vs intentional violence

Things you need to know about autismIn Aysh’s case his bark is most definitely worse than his bite. I have seen fully grown men take a step back when Aysh starts to escalate, raise his voice and hit his head. But he has rarely hurt anyone – at least not on purpose. I learnt long ago to position myself so that I do not get between him and whatever he is trying to hit his head against.

Violence, for anyone, may occur in a moment of anger. If someone resorts to anger when they can not express themselves in other ways, they may be more prone to violence. In Aysh’s case, this is directed at himself and not others.

8. People with autism can have successful romantic relationships

People with autism do have a desire for intimacy and companionship. However, because they have challenges with social interactions it can make finding a partner and maintaining a relationship hard. But it does happen.

Parents with autism

In my work, I have been lucky enough to work directly with parents with disabilities, including autism. Many of the parents have been in relationships. I am always impressed by the loyalty, reliability, commitment, and honesty I have seen between these couples, where one or both have autism.sky, grass, outdoor

We are still unsure what the future holds for Aysh in terms of romantic relationships. While his sexual interests seem delayed for his age, we can’t deny that at some point he will show increased interest in others. He enjoys the company of others and seems to gravitate toward girls, but I suspect this is because they “mother” him and tend to be more communicative than boys.

Supporting Aysh’s future relationships

Our mission over the coming months and years will be to teach Aysh appropriate interactions with others. We are currently ‘shopping around’ for supports and resources to help guide his understanding of how to appropriately approach someone who you would like to connect with. If we don’t, I am concerned that he will become an adult that does not understand boundaries, and could potentially put himself, or someone else, at risk in the community.

9. Not all people with autism have intellectual disability

Research

Research suggests that approximately 30-40% of those with autism also have intellectual disability (an IQ below 70). Another 25% have a mild intellectual disability. This means there are still a lot of people living with autism who have an average (or even a high) IQ.

What does this mean for Aysh?

Aysh is a kind of anomaly when it comes to IQ, and I suspect this is the case for many like him. Due to his challenges with communication – including speech and understanding instructions – he has never been able to comply with an intellectual assessment.

Truth is, we don’t know if his IQ is below 70 or above 120.

Things you need to know about autism

We tend to use the term intellectual disability because it better describes the challenges Aysh has with interacting with the world. It isn’t that we have made it up. He seems to meet all the criteria. But then he will do something that totally surprises us and suggests that his cognitive functioning is more advanced than we give him credit for.

10. Not all people with autism are the same

There is a popular saying the world of autism – “if you have met one person with autism, you have met one person with autism”. I would love to give credit to someone for this quote but truth is it has been used so widely, it is hard to know where it originally came from.

Autism is like other human conditions, it has variations, and personality differences across the whole spectrum. Autism does not impact on any two people the same way.

If you have met one person with autism, you have met one person with autism.

I have met just a small handful of children and young people with autism who I think “wow he/she is so much like Aysh”. And then they will do something, or their parent will tell me something, and I am reminded that they are still very much individuals.

Autism as a lens rather than a label

Things you need to know about autism

Rather than trying to understand specific features of autism as a whole, it is more useful to use autism as a lens to try and get to know the individual.

Each individual with autism – like every human – has their own way of communicating, interacting and behaving.

If you just ask them, or their parents/carers, how you can get to know them, I am sure they can give you some guidance.

10 Things You Need To Know About Autism: Conclusion

Attitude is important for autism awareness. Aysh is open and honest about who he likes and doesn’t like. He seems to know who is willing to make the effort and be patient with him, and who is too busy rushing by with their own agenda. Many people with autism are intuitive about the attitudes of others, so if they appear not to like you, you may need to check in with your own values and judgements about autism.

Thank you for taking the time to build your autism awareness to create a more positive world for Aysh and other people with autism in your own community. What else would you like to know about autism?