Tuesday, May 10, 2016

About Autism


Let’s Talk About Autism
Beth Hiatt, 13
I have autism. And I’m not ashamed to admit that.
It may come as a bit of a surprise to you, as the only autism you may know of being exposed to have is the low-functioning, severe, non-verbal kind.
I do not have low-functioning autism. I am a high-functioning autistic. There’s a whole spectrum of autism, (that’s why its full name is autism spectrum disorder) and no two people with autism are the same. Those with high-functioning autism/mild autism/Asperger’s syndrome do indeed face extremely different issues to those with low functioning autism, but there are similar issues affecting the majority of the spectrum that most people do not know.
Imagine having all five senses multiplied by one hundred. Many people with autism, myself included, have never experienced complete silence. We always hear the humming of the lights, or a bird outside, or even the sound of our own breath. We always hear this loud and clear, even in noise-filled crowded room. We feel labels in our clothes for the entirety of the day if they are not cut out, some smells and tastes make us literally unable to breathe. After this all gets too much (trust me, this usually doesn’t take too long for most) we can experience something called sensory overload. If visible to others, it probably looks like a tantrum (If you were wondering, I haven’t experienced full-blown sensory overload in years, but it still stands. You just learn how to repress it). However, we are not waiting to see if others respond. We want to get out of there as quick as possible, and we certainly don’t need judgement from others. I know our behaviours may seem self-injurious to those around us and it may seem funny to see a child who is not two kicking off and screaming, but who are you to judge? You have absolutely no idea what it is like.
Imagine being seen as rude when you do not get the gist of social norms. Most people are born with a general understanding but just need to be reminded to mind their P’s and Q’s from time to time. Usually, they are well-mannered by the age of four or so. Well… we are all still learning, whether we are eight or eighty. We do try our hardest to think before we speak, but we slip up quite a lot. Sure, it’s funny and cute when a three year old says something they shouldn’t, but when a nine year old accidently starts an argument between their family after they repeat something their parents muttered under their breath (Guess who did that, kids!), you’re seen as rude and inconsiderate…
Imagine struggling to catch a ball, hold a pen or do anything that involves fine or gross motor skills. We are the children that run with a gait, who are always picked last for the team, whose handwriting ranges from scruffy to illegible. The worst thing is, we are not often given help for this. As autism is known as an invisible disability, people think we are not trying hard enough, children laugh at our mishaps, we feel left out and like a failure on many occasions.
Although after reading this article autism may seem like a terrible thing to have that will ruin your entire life, don’t be fooled! All of the best scientists (Einstein, Edison, etc.) that changed our world and way of thinking drastically were rumored to have autism, along with such famous faces as Daryl Hannah, Tim Burton and the legendary Temple Grandin. We can go on to do the most amazing things if our self-esteem isn’t shattered.

Autism has no known cause and no known cure, but there is somebody who can make life easier for those who are diagnosed.
It’s you.
Autism Awareness Day is coming up on April 2nd, and you will probably be told to wear blue to make people more aware, but I want you to do more than that. Make every day autism awareness day. Try to make a safe space if somebody with autism is on edge at a party. Gently nudge them if they say something wrong. Pick them for your team if playing sports. Even smiling and saying hello in the corridor. Small gestures matter. Often, they can speak louder than words ever could. Please, be autism aware.

Thank you.

On March 25, 2006, a team of therapists and social workers diagnosed my son Max with autism. It was a cold grey Sunday, in our tiny condo in the Charlestown Navy Yard. The day was also Max’s second birthday, and once our door slammed as the visitors left, we had never felt more isolated or alone.
Not a great birthday present. What’s followed is a 10-year odyssey of learning about autism, but more important, learning about Max, my wife, myself, and our extended community of friends and family.
You hear this about many medical conditions, and it’s true about autism: when one family member has it, the family has it. The effects are pervasive. And there’s a natural conflict in the mind and heart of an autism parent.
The dark side is exhausted, frustrated, sad, and anxious over the current state of their child. “What is his future like? Will he be alright after I’m gone? Who will care for him when he’s an adult?”
The light side is positive, enthusiastic, happy, and calmly looking forward to the child’s next achievement. Next word, or glance or gesture, which sometimes come painfully slowly.
Those two emotional states—exhaustion and elation—must coexist for the parents to function. The true definition of cognitive dissonance.
And while all parents face this to some extent, parents of autistic kids feel it more keenly, and for longer—ASD kids can develop differently and more slowly, so the concerns a typical parent may have for a three- or four-year old can persist for many years in an ASD kid. And we feel it in ways that make us confront personal and familial issues head on, with no filter or buffer.
You may not know it, but you know someone who has a child with autism. According to the CDC in 2014, 1 in 42 boys and 1 in 189 girls has an autism spectrum disorder.
I shared two readings for today. The first, Violet Fenn’s article, offers some positive advice on connecting with and showing support for parents of ASD kids, from a simple “Are you OK?” to an offer of a large cup of gin.
But it’s easy to lose the voice of the person with autism in the discussion, because people with ASD oftentimes cannot express themselves in ways that neurotypical people understand.
The article by Beth Hiatt, a 13-year old Australian, published in her school magazine helps give voice to the voiceless. To share some insight into how persons with autism are affected by everyday occurrences.
One thing you will seldom see from persons with ASD is discussion of a “cure” for autism. For them autism is part of who they are, and suggesting that it’s a disease implies that they themselves are less-than neurotypical people. Also you will hear more about “neurodiversity” in the years to come, a movement that encourages acceptance of all persons across the autism spectrum and beyond.
This movement resonates at MIT.  The connection between quantitative, systematic thinking and autism has long been known, and the dimensions of that connection are becoming clearer. A recent Stanford Research Institute International study examined 11,000 students across the country and found that more young adults with ASD choose science, technology, engineering and math majors than their peers in the general population or with other disabilities.
A common thread between persons with ASD and their parents is that autism is not a disease. From my perspective, autism is a catch-all term for numerous, interconnected neurological conditions that express themselves differently and to differing levels in each person. Hence the saying, “If you’ve met one person with autism, you’ve met one person with autism.” And while groups like Autism Speaks—whose mission is to research “causes, prevention, treatments and a cure for autism”—light up the world blue and cover it in puzzle pieces to raise awareness of autism, I suggest that persons with ASD, and their families need support, understanding, and acceptance more than they need a cure.
Each morning I wake up with that conflicting mix of sadness and hope. His mom and I help Max get ready for school—which he loves—and send him into the world not knowing what the world holds from him … a feeling that’s very different from the similar worries of other parents. I believe the world will be more accepting and accommodating in the years to come for Max and people like him. Technology has helped persons with ASD connect with the world and others in new and exciting ways. But while I get to share my feelings and experiences with you today, there’s someone else you know who is feeling scared, alone, and isolated, and who could really use that huge cup of gin and some encouragement. Both moms and dads.
Please help them. I—and they—will appreciate your caring. Thank you.


Seven things you should say to the parent of an autistic child
Violet Fenn, Dec. 15, 2015 (Excerpts)
1. I don’t understand autism, can you tell me more? - Most of us knew very little about autism before we had kids, so you’re not alone! We’re happy to fill you in, just remember that our view is about autism as it affects our family and our views are likely to be different to the next person you speak to.
ASD-related issues affect people in different ways, so never be afraid to ask.
2. Are you okay? - The most obvious, and the easiest for both parties. Sometimes all we need is a friendly smile and a casual enquiry – even if the answer is a resounding ’No!’, it’s nice to know that people care. I usually go with a tilt of the head and knowing eye roll – accompanied with a mouthed ‘you okay?’ it can be enough just to let that parent know they are not alone.
Most people are well practised in dealing with their autistic child’s public meltdowns – nothing teaches tolerance than having to stand quietly by whilst your offspring screams incoherently at the top of their voice in the middle of a shoe shop. I learnt long ago that it’s usually easier to let my son yell a bit then shepherd him out of the store with the first pair of trainers I could find, crossing everything that they actually fit. But I have on occasion been very grateful for a stranger picking up my bags and helping me wedge them over my shoulders so that I didn’t have to let go of the screaming banshee in my other hand.
3. Can I help right now? Would you like this very large glass of gin/cup of coffee/shoulder to cry on? - As in, ‘can I do the shopping/run to the post office for you/go get you a newspaper’ – when we spend an awful lot of our time on high alert and/or filling in the endless paperwork that seems to come with ASD diagnoses (not to mention the appointments), parents of ASD kids almost always drop themselves to the bottom of the priority list.
You don’t even have to speak in order to help us – just do something that shows you care and/or empathise. We’re not expecting you to have any answers – hell, no one appears to have the answers, not even the endless specialists that end up involved in our daily lives have the answers – but a friendly ear and a cuppa can work wonders after a day of trying to figure out why our kid is utterly hysterical when all we did was put their chicken nuggets on the opposite side of the plate to usual (we didn’t even know there was a right side of the plate until now).
4. How are you? - So simple, yet it makes such a difference. Just knowing that others are thinking of you can sometimes be all you need to get through the day. But you have to mean it – there is a fair chance that we will tell you exactly how we are in great detail, along with flailing hand gestures and incoherent wailing noises. Do not panic! Keep passing the tissues and the chocolate and we will eventually wind down like a clockwork toy.
5. How are you/what are you up to? (directed at your child) - As with all people, some autistic kids will be better at communicating than others. My son can talk the hind legs off a donkey if it’s a subject he likes, but will be silent and utterly non communicative if you ask about something he has no interest in. The fact that he finds interaction difficult doesn’t mean that he doesn’t want to interact at all, though – he loves people and is in the most part incredibly polite and personable.
6. Would your son/daughter like to come? We can work around their needs - My son has been to very few birthday parties in his eleven years and they’ve tailed off almost entirely as he’s got older. When another child at his old primary school invited him to his party last year I actually wept with gratitude. We know that it can be difficult to include our kids, but we are so very bloody grateful to those who make the effort.
7. It’s not your fault/I believe you/you are doing a good job - We really, really need to hear this sometimes, even if we already know it. However confident we are as parents, a lot of us have been in situations where our child has been utterly awful and we’re left to pick up the pieces (sometimes literally). And however much we know they don’t mean it, there’s often a tiny voice in the back of our head muttering ‘maybe s/he wouldn’t be like this if you were a better parent’.


Matthew Bauer
Director of Communications, MIT DSL