I’m not the easiest person to take places. I’m not the easiest person to introduce. I don’t do a great (or sometimes even good) job of carrying on a conversation, especially with strangers. I stim. I often have a chew toy with me.
Some people might think of me as a liability or think they have to babysit me. They may want to make a good impression and are afraid I’ll say something wrong or make others feel uncomfortable because I’m not making eye contact.
But when I feel excluded, when I’m not invited, it really hurts.
If I feel like other people don’t believe in me, why I should believe in myself? If other people don’t think I’m capable, why should I try? I’m told I need to expand my comfort zone, but I need opportunities to practice this.
I have goals and aspirations beyond where I am now. I don’t want to be invisible for the rest of my life.
Autism doesn’t mean I don’t want meaningful relationships. Autism doesn’t mean I can’t learn or I don’t want to learn. Autism doesn’t mean people won’t like me.
When people do meet me, when they find out what I do and how I do it and that I have autism, they are typically impressed. They want to know more. They think it’s cool. People are learning to appreciate difference… at least some of them are.
I have feelings. I want to be appreciated. I want to be thanked for my work. I want to be talked to even if I can’t always respond. I want to be included. Don’t just talk about me. Get to know me. Get comfortable with inclusion.
If you are being excluded, my advice is to be nice anyway. Believe that it is their ignorance and not a reflection of you. It is not your fault. You did not choose your neurology. You are doing the best you can.
To many who come across autism in passing, it may be considered a disability through which people are rendered in some way unable to function as “normal” people and thus (this part is usually unconscious) perhaps “less valuable” than those who do not have autism.
As the parent of a child with autism, I would suggest the reality is starkly different.
From what I’ve observed, the most obvious difference in the experience of autistic people is the degree of sensitivity. For an autistic person, opening the curtains on a moderately sunny morning might feel like having a very bright flashlight shone directly into their eyes at close range; a plate falling onto the kitchen floor might sound as disturbing as standing next to loud drilling on a building site without any earmuffs. The National Autistic Society has produced this short but powerful film to give us a glimpse of what it can feel like to constantly experience this sort of sensory overload.
But rather than being a deficiency, isn’t this a great attribute — an acute ability to perceive the detail of sensory information? Isn’t it a refined way of using our senses for what they are actually for? I feel the problem isn’t with the autistic person, who has these abilities, but with the rest of us whose sensory processing has been blunted by living in a world in which constant, extreme sensory stimulation is used as a substitute for excitement. Many of us seek out busy environments with flashing lights and loud noises as a means of having what we call a “good time.” We build shopping centers in confined, indoor spaces where the sound resonates and spend hours at a time there. Even the most benign children’s films are often aired at great volume in cinemas, with loud, sudden, intense emotive music. Over time, it seems our senses have adapted to the increasing prevalence of this sort of thing as the new norm, and we have learned to withstand it. The already heightened senses of some autistic people may not have. In a world in which we didn’t feel this compulsion to overstimulate ourselves in such a way and unintentionally overwhelm our autistic brothers and sisters, perhaps their sensitivity wouldn’t be “problematic”; I believe it could be a huge strength, as their refined senses would be a great asset.
Another aspect of the sensitivity of autistic people is the emotional part of it. It may often be assumed that an apparent lack of understanding of or reaction to emotional expression is indicative that there is no sensitivity to it at all. Again, I have witnessed the opposite. Someone raising their voice a little can affect an autistic person not only on the level of the sound itself, but much more so on the level of the intensity of the emotion, which they may feel powerless to stop entering them. An autistic person’s great emotional sensitivity might mean somebody else’s annoyance or anger is experienced as enormous pain. This is what I have observed in my son and other members of the community. The reactions of others can be deeply painful. Those with autism may not have the option of feeling OK with the negativity that is around them and are not given a positive way to be able to interact with it.
In the book “Transforming Autism,” which explores this perspective at greater length, I use the example of a set of very sensitive kitchen scales, which can measure to a hundredth of a gram, versus a set of robust industrial scales. If a 5-kilogram rock was dropped onto each of them, the industrial scales would likely be unaffected and go on working as normal, while the kitchen scales would at best start to malfunction — giving unreliable or incomprehensible readings — and at worst be crushed. The kitchen scales, being so refined, can give a much better quality of reading than the industrial scales, but at the cost of their resilience. To me, the analogy is obvious. Think what the growing community of autistic people could bring to this world, how they could improve it, if only we let them; if only we recognized the richness and refinement within each of them; if only we didn’t keep piling 5-kilogram rocks on top of them.
I believe a state of enhanced sensitivity can enable those who have it to bring great perception and loving care into the world. In a circumstance where calmness and mutual consideration reigned, I believe they could not only be fully integrated into the world, but become pioneering leaders, setting an example for the rest of us. But the state is fragile. We may be preventing the expression of this enormous potential and creating a world that can be intolerable for them to live in.
Let us consider autism from this perspective, and begin to respect and appreciate for what it is the unique individuality of each autistic person.
My daughter is 11 years old, and she is on the autism spectrum. Her independence over the past year has grown, and she now walks many places on her own and takes public transport for slightly longer journeys.
With this growing independence, it seemed appropriate to buy her a phone. There seem to be varied opinions about young children owning phones, with lots of pros and cons as to whether children having access to technology is healthy. I initially bought my daughter a phone for safety reasons, for when she is out of the house. But over time, it has become a wonderful tool for us to communicate with each other about more personal matters, including when negative emotions arise.
My daughter can have difficulty expressing herself in spoken words. She often keeps her emotions to herself, and it can sometimes lead to a meltdown. When she was younger, we used a pen and paper when negative emotions arose so she could write her worries down and then share them with me if she wanted to. The emotion she feels often seems too big for her body, and finding a positive outlet has been key to reducing the frequency of meltdowns. Now she is growing, we have found another way to “talk” with each other that doesn’t need spoken words.
Utilizing technology to support communication is on the rise. There are many apps that have been developed for the purpose of helping people with autism communicate. We have found using a simple messenger app can help us communicate at the most difficult times: prior to and during a meltdown.
With the onset of a meltdown, words seem to leave my daughter. She tells me her thought processes become fuzzy and she can forget the strategies we have been working on. Talking to her when she is heading for or during a meltdown is often futile as it can just escalate her feelings of upset.
On occasion, when out of the house, my daughter has chosen to message me to tell me she isn’t feeling well. I always encourage her to share her feelings and started giving her advice on what she could do over text. This text communication has now grown to be used even when we are in the same house, particularly prior to or during meltdowns.
When my daughter is in a meltdown, all I want to do is cuddle her and make her feel better. The last thing she usually wants when she is in a meltdown is to be touched by anyone or hear words of any description, regardless of how loving they may be. So now, instead of physically helping her, I choose to text her that “I love her” and ask her what she wants me to do to help her calm down. Sometimes she will say “leave me alone” and other times she says she “doesn’t know how to calm down.” On these occasions, I text her a plan for calming down, including the strategies we have been working on so she can read and process them in her own time.
As my daughter has grown, I have had to be inventive with alternative ways to communicate. Using a messenger app with my tween daughter allows for emotions to be expressed, even when verbal words are lost and physical contact with people is not preferable. It keeps the whole household calmer in general and can help ease my daughter’s upsets.
One thing I have realized from parenting my daughter is there are many ways people can communicate. I know it may seem alien to some that a lot of the support I offer my daughter when she is distressed is through an electronic device, but for now it works for us, and we look forward to embracing whatever technology is developed in the future to enhance and support our daily lives.
Ten years ago, I was filmed for a documentary about autistic adults shown on the ABC, along with three other autistic adults. In one scene I was talking about my difficulties feeling love with a partner. I said, “I think I would only go out with an autistic partner because at least we would understand one another.”
That statement was a difficult thing for me to say at the time. I had never felt much love for human beings. In the few sexual relationships I had, I usually just found my partners confusing and slightly irritating. I certainly didn’t feel anything like love. I believed I must be a broken human being to be devoid of this characteristic that has inspired poets and artists for generations. I believed that, because of my autism, I was deficient at something other people seemed to find second-nature.
I imagined I would live my entire life not ever feeling love. I thought about what a horrible person I must be. I really wanted to be able to experience love, but when I tried to understand what love felt like, I couldn’t get it. As far as I saw it, my autism stripped love from me and meant I was incapable of the feeling. While I no longer feel that way, I felt less than human. I related my experience to the android character Mr. Data in “Star Trek: The Next Generation” — a machine, and functional as a human in all aspects except that he the lacked emotions the human crew members took for granted.
Thankfully, I have the wisdom of 10 years’ experience to challenge some of my own unhelpful thinking around the issue of autism and love. I discovered I am asexual and aromantic a while back. This means that having a partner for me was more based on my wish to do what other people expected me to. I had no desire for love or closeness, which I never got from sex or romantic intimacy anyway. The reason I didn’t feel love for my few partners was simple — I didn’t love them. You can’t really manufacture love.
Another thing I discovered quite unexpectedly was that I had immense love when my first niece was born. I was overwhelmed by it. I felt like it filled the room and went out the door and out into the world, probably making people smile in the next suburb! It was like nothing I had experienced before. And then a couple of years later, my second niece came into the world, and a while after that, my nephew. I felt great love for those three beautiful little people. I also feel love for my mum — lots of it — and my dad. I love some of my friends, too. And I’m sure my naughty, beautiful little black cat Mr. Kitty occupies a large part of that bit of my brain that feels love and closeness. There really is nothing like the bond between an Aspie and her pet.
My love for people is not some kind of overwhelming thing I feel all the time. There really aren’t any metaphorical fireworks. It is a sensible emotion, sitting somewhere between joy and care. It is reliable and and gentle. I suspect that most people’s love might be like that. What we see in movies is probably an exaggeration, but a lot of us see that as the benchmark. In fact, I think for autistic people, seeing those sweeping emotional portrayals of love in films and books can be really confusing, Like me, they may worry they are cold emotionally because they don’t feel the need to lay down their life for someone or write “I love you!” in the sky.
Another thing I have realized over the years is that I am filled with love. I know this because I care so very much about all the people who come into my life through my autism advocacy. I put in thousands of hours of time in mostly unpaid writing, public speaking and representation. Those hours and my willing work have come from a place of love. There can be no other reason to it. I want to make a kinder world for autistic young people and for them to avoid all the misery I went through in my youth.
So yes, I don’t have a partner or a bunch of my own kids to love, but I have lots of love in my life.
I think the stereotypes around autistic people lacking love come from a place where the experience of love for an autistic person is not understood and is thus dismissed. Like all stereotypes, it has come from place of misunderstanding and unwillingness to listen to the autistic view.
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When a child is diagnosed with autism, well-known therapies like speech, occupational and physical therapy can be introduced. One therapy that tends to get overlooked in my work, though, is “theater therapy.”
When I was diagnosed with autism at 4, I was already a huge fan of Disney films. Even though I hadn’t started to talk in complete sentences yet, I’d say a few of the words and then hum the rest of the time. That fascination only grew with being a fan of shows like “Thomas The Tank Engine,” “Teenage Mutant Ninja Turtles” and “Power Rangers.” My love of these shows made me want to mimic the characters at times.
Months later, after my diagnosis was confirmed, my parents would take notice of this when trying to find new and innovative ways to help me overcome some of my social and communication challenges. This led to the start of my journey in theater therapy. For the next 15 year,s from pre-K through graduating high school, I would act in over 20 plays. My love of film and television would only continue to blossom. Even though I would stop acting to focus on school and disability advocacy, I was still truly happy with being a fan of the TV and film industry.
A few years later, I was starting an internship and received a call from a movie director named Todd Graff. He had heard about my work in the autism community and wanted to ask if I could help with his new film, “Joyful Noise,” in which one of the characters had Asperger’s syndrome. I immediately thought I was being “Punk’d.” But after a short conversation, he sent me the script of his play. A week later, we had lunch in New York, and after that conversation, he asked me to be a consultant on the film to make sure the character in his film was as realistic a portrayal of a person on the autism spectrum as possible. After a year and a half of being a consultant, the film was released, and I was able to go to the world premiere at Grauman’s Chinese Theatre in Hollywood, California. Then after the film was over, I saw my name at the end of the credits. I had finally seen my name, after years of being a fan of film, in an actual film.
Looking back as the kid who used to be nonverbal and have so many challenges, I’ve been blessed with an opportunity to help an industry I have a passion for. I can only hope more projects will continue to give me these opportunities to follow one of my true passions for years to come.