Friday, June 7, 2019

How Being a Minority (of Mixed Race) on the Autistic Spectrum Shaped My Life

Emanuel Frowner

Emanuel Frowner (photo courtesy the author)
[image: A smiling mixed race man with short black
hair in a natural style, and a mustache. he is wearing a
collared orange-and-blue Knicks pullover.]
I grew up mostly in the Bronx with my dad and my grandmother, and I still live there. The neighborhood was dangerous during my childhood because of fighting and drugs—a few people were killed. Therefore, I could not go out alone (until I was 17) and my folks were very protective of me. I would see my mom on the weekends. Sometimes, I would hang out with my siblings (with my folks). They had a different mom than I did, but we had the same dad and grandmother. Even though my grandmother looked very white, she called herself black, but my dad did not agree with her on that. My mom called herself black as well.

I was very quiet, and I would stutter sometimes.  My grandmother told me that this was because I think faster than I talk. She also told me that a still tongue keeps a wise head. I took these as compliments.

I went to an elementary school right near where I lived. At first, I did some mischievous things like breaking forks. During a test, I bubbled in all of the choices and the kids started saying that I was all wrong. The teacher erased them. My grandmother found out about this and she was not happy. At that point, I started doing a lot better and I began getting good grades on my report card. I kept working hard and with the help of my folks, I was named student of the month. This was an honor for me and it made me feel proud.

This did not prevent me from being bullied by other students and teachers just because I was different, which led to my dad homeschooling me from the 6th grade until I got my GED in 2000.  Being homeschooled helped me excel academically. It also helped me develop a strong work ethic, and it helped me to think outside the box.

Another reason my dad homeschooled me was because he did not want me to be fed nonsense. My dad did not want me to get a diagnosis that would put me in a box, or have a label so others could categorize me. He also did not want my brilliance and sensitivity to be overlooked, or want me to be marginalized to the point where it would do irreparable damage. This was a culturally specific issue (which is described later in this essay) as well as a generational issue; my folks stressed that getting an education was the most important thing. And my dad also did not want me to be apart of the herd mentality; he wanted me to develop along my own lines. He took me to his job to meet his coworkers and we all would hang out sometimes. It was okay for a while, but I would have liked to been around others who were similar to me.

Technology really came into my life when I was in my late teens. I began emailing and texting, and no longer had to rely on talking when communicating with others: I could take my time, and respond at my own pace. This also helped me have more privacy, and over time I began making my own decisions.

Before I knew I was autistic, quite a few people told me that I was very bright person who was just quiet and shy—even though I had particular interests like dates, sports stats, being punctual and being patient, yet did not have a few social nuances that others had. This may be because, being mixed race and from a minority culture (I am part Caucasian, part African American, some Native American, some German and a little Scottish, just to name a few), I found that talking about psychological subjects like autism is overlooked and is often talked about in a bad way. Also, I hardly received the type of support or empathy I needed when I was struggling. For example, when I stuttered a bit, I was told that I was hesitating. Another example is when I chose Psychology as my major in the summer 2004, one of my relatives was not supportive of this. But it made me even more determined to do well and I got my BA in Psychology from St. John’s.

In 2005, I started hanging out with my oldest brother Blair, who lived in Canada. He knew an autistic lady, started reading about ASD, and began telling me that I might be autistic. He did some research online and found the Seaver Autism Center at Mt Sinai for me. I did interviews and tests there, and the doctor told me that I was on the autistic spectrum. I was a little surprised, but it was a blessing in disguise.

I began reading up on autism. Two years later When I told my dad what the doctor said about me, he was surprised, but then he came to accept it. I joined some support groups over the years and made a few friends. In 2009, a lady, Katrina R. from Job Path, helped me obtain two jobs through customized employment. I have had those jobs for eight and a half years.

Today, I still work, and also do some speaking gigs. I am also a die-hard Knicks fan, and have been for years. In the future, I would like to do even more public speaking and I would like to run workshops relating to autism. I would like to write a book about my life story and I would like to write more articles on topics relating to autism. I would like to one day run an autistic group designed for minorities. I would definitely like to do more acting in order to improve my skills.

Thursday, May 30, 2019

Behaviour Analysis, The Autistic Way

Ann Memmott PGC

Autistic children endure a lot of ‘behaviour analysis,’ usually done by non-autistic people who are not trained to interpret autistic behaviour and motivation. Often they are taught to assume that the motivation is the same as that of non-autistic children. Thus, if a child gets out of their seat, they are taught that perhaps they are avoiding working and need to be incentivised to sit down and concentrate. Or perhaps that they are attention-seeking and need to be ignored. There’s entire years of courses designed around such theories.

Autistic children aren’t the same as non-autistic children, though. Their reasons for behaving in a particular way are often different, because their brains are designed to work differently. I see too many books and training courses where teachers are told that autistic communication & social skills are faulty, that autistic children are usually to blame and need altering. New research shows clearly that this isn't so, as I talk about on my blog. Autistic people use a genuinely different way of socialising and collaborating, and can often communicate and collaborate well together. But, the difficulties arise when an autistic and a non-autistic person try to understand one another.

Let's say we have a five year old autistic girl, Sam. Sam is asked to sit still on the floor at school during 'circle time.' Sam does not sit still. Sam gets up and wanders round. What's potentially happening here?

Firstly, let's look at how the classroom may appear to Sam. Not all autistic children will see this exact effect, when in noisy, busy, fluorescent-lit spaces. Some do. In this, perhaps the teacher becomes invisible in the sensory chaos.

Photo courtesy Ann Memmott
[image: Overexposed photo of a busy, cluttered classroom.]
Secondly, Sam may be able to hear people talking across the entire school. Next door, moving in the hallways, chairs scraping, bells sounding, planes overhead, clocks ticking. It is a deafening, bewildering experience for those whose hearing is designed to detect oncoming danger, and so who listens to everything, everywhere, all the time. Often, the teacher becomes impossible to hear. That’s a reality of autistic hearing, for many.

Thirdly, Sam may find sitting on a hard floor intensely painful, and doing so becomes torture. Autistic sensory differences may mean things tolerable for others are beyond our ability to cope.

Fourthly, Sam may have Restless Leg Syndrome (“RLS”). Some autistic people do. Researchers suspect it is due to a chemical imbalance that causes intense feelings of rising uncomfortableness, often in the legs. Usually the only quick way to stop the torment of it is to move sometimes. Look it up.

Fifthly, Sam may have a form of Ehlers Danlos Syndrome (EDS). Some autistic people do. It can lead to joint problems, pain, exhaustion, and extreme difficulty sitting unsupported. None of that is deliberate avoidance or attention seeking. Nor is it slumping in a chair because of a poor attitude.

Sixthly, does Sam also have ADHD? There’s a big overlap between autism and ADHD, and sometimes the ADHD is missed. Sitting and concentrating for a long time can be almost impossible for some, therefore, and breaks desperately need to be taken.

Seventhly, Sam may encounter what some autistic people may experience when in sensory hellish places or during too much social interaction—unusual brain activity. Not a full epileptic seizure, but 'spikes' in electricity in the brain, which can lead to unusual responses for a while. Those are entirely out of the individual’s control. It may lead to them ‘shutting down’ or ‘melting down,’ the former being a switch-off response where they cannot communicate. The latter resembling a temper tantrum, but it is not. Neither response can be ‘behaviour-trained’ out of them, as it is not a chosen behaviour.

Possible Reason eight, Sam may find that being jostled leads to intense pain, for example in circle time if the children are very close. An unexpected jostling can feel like being electrocuted. Sam may wish desperately to put space between themselves and potential pain etc, and may need a much bigger personal space zone.

Some autistic children flap their arms or shake their fingers in front of their eyes, for example. Finding our bodies is really hard, because we don’t have a good bodymap in our brains, so this helps locate which bit of us is where. Or it may be a way to regulate what we’re doing and feeling. Or it may be a way to understand how far away we are from other things. Making it stop is somewhat like stopping a Deaf child using sign language, but worse. Yet, I see ‘extinguishing repetitive behaviour’ on so many behaviour plans for the children. Some repetitive movement may be around RLS and EDS also (see above).

There’s another reason why Sam may be patrolling the outskirts of the group. We’re generally better at detecting oncoming danger. In villages and tribes, autistic people would have the hearing range and eyesight-detail that might enable them to be the very first to hear an oncoming predator. The very first to smell approaching smoke. Being on the outskirts, watching, listening, is potentially how a lot of communities survived. A village would benefit from such a lookout person, not distracted by social chatting and looking at the eyes of other people. That patrolling behaviour could be a perfectly natural autistic instinct, therefore. In class, it’s a behaviour that may need clarification that they can relax, that all is OK, that they can return to their place because there are alarms, sensors, and staff already taking care of that detecting. Number of behaviour manuals I’ve ever read this in? None at all.

A further possible reason for behaviour is around trauma. Too many autistic children are victims of traumatic experiences at the hands of some others, and go on to show clear symptoms of PTSD. Escape responses or other trauma responses are not then ‘being naughty.’ They are from a place of terror. Behaviour plans take little or no notice of this possibility, in my experience.

All autistic behaviour has always been thought of as faulty, until recent research has helped us understand its wider purpose.

So, what can we do to potentially help Sam to hear, see, relax, and not be in pain? Let's think.

First, Sam’s medical team may wish to do some autism-friendlier testing for those medical possibilities of RLS, EDS or epileptiform ‘brain spiking.’ It may be worth someone doing an investigation for ADHD, too, and a general medical checkup for any other pain condition or illness. Many autistic children do not register pain and illness in the usual ways, and so may not be able to explain these. Mindful of our own son, who played sport with a broken foot for some weeks, not registering the pain he was in. Thus, medical teams thought it was just bruised.

Can Sam's class not have fluorescent lights or blinding spotlights? Can they be switched off if it’s bright enough outside? Can Sam have sunglasses perhaps, or a baseball cap to cut out glare? Can Sam trial noise cancelling headphones perhaps? Can Sam be allowed to sit on a comfy chair, to avoid collisions and to enable better support and less sensory pain? Can Sam have regular scheduled short breaks and a signalling system to say they need this? Can electrical equipment in the class (overhead projector, computers) be switched off to minimise noise? Can rooms be carpeted, if budget allows?

Can people please Ask Sam What Would Help. Capitalised, because strangely enough so many never think to do this. Whilst some autistic children do not use spoken language, all can communicate. Sometimes the behaviour is the communication. See below for involving autistic expertise in translating, if needs be.

Personally, I want to congratulate Sam for being in that class at all, and engaging in any way, given the obstacles. I start from thinking, "How fantastic to be in a class with Sam. This is my learning opportunity. What behaviour and attitudes of mine can I change?”

Certainly I'd want to bring in autistic specialists. That’s different from autism specialists. Autistic specialists are professionals who are autistic, and are able to interpret and decode autistic communication and behaviour. They can interpret autistic communication, and note any sensory difficulties that non-autistic brains may miss. Quite easy to find these days.

I'd want to affirm and support Sam, enabling them to be their best autistic selves.

Like any child, Sam may well try to get out of activities just because there's something more fun or less work. But that's not my 'go to' for autism. Generally autistic children want to learn and want to follow rules. If that has gone wrong, we need to think way beyond the toolkit for decoding non-autistic children, which is the one so often used.

Our autistic children are doing their best to survive in schools. We need to move beyond the old mantras and myths around reasons-for-behaviour, and into a present and future where we understand deeply and work collaboratively. Then, we have better experiences and outcomes for everyone.

Thank you for reading.