brexit puzzle piece

In the run up to the Brexit referendum vote, as a relatively recently diagnosed autistic adult, I’ll admit I was scared.

I was right to be afraid. The country had descended into divisive and hateful rhetoric perpetuated by factions of a Conservative leadership. The same rhetoric that had been used by people in power to generate a genocidal movement against the Jews, not so very long ago, was being resurrected to further political interests, irrespective of the human cost. In the same breath that international courts of justice were still convicting people of war crimes committed during World War II, atrocities of war and hatred were being perpetrated against Syria and the victims who had fought all odds to escape the hell inflicted upon them.

History shows that in a society which seeks to implement political austerity the areas which will suffer are the vulnerable, the poor, the arts, economic growth, international relations, scientific and social research. I have witnessed that when communities are in pain due to very real economic and social struggle, it is easy for the powers which have inflicted these wounds to divert justifiable anger away from themselves to other sources of blame. In the case of Brexit, it was European immigration, and since the vote, European citizens living, working and successfully contributing to the U.K. economy have become innocent targets for exponentially increasing hate crime.

As a disabled adult I understand the effects of this kind of campaign of austerity and nationalism can be far-reaching and reverberate through many generations.

Steve Silberman, author of “Neurotribes” found that during the run up to World War II, Austrian psychologist Hans Asperger was researching a condition which he came to name “autism,” but laterally came to be known as “Asperger’s” (a term no longer used in the DSM V). In the vacuum of hatred and demonization of the disabled tearing through Nazi Germany ahead of the war, Asperger apparently focused his findings around the capabilities of his young charges to protect them from the gas chambers. The research focused around boys but did not claim girls were unaffected, simply that they had not been encountered during Asperger’s research. In the maelstrom of the last days of the war, this research became buried and then for decades lost in Europe by a society for whom the wounds of the war were still open and weeping. It was not until the 1980s that Asperger’s work was recovered and translated from German by a British psychologist, Lorna Wing, and the criteria for diagnosis broadened and opened up.

The result of these lost years of potential advancement in understanding is a critical crisis in the autism community. Research still remarkably focused around curing children and a diagnosis criteria that is still dramatically biased towards boys has left girls and adults floundering without support and minors often at the mercy of archaic curative measures.

As increased understanding and awareness open up, society has seen an increase in recognition and diagnosis; however, continuing proliferation of stereotypes and misinformation mislabel this increase an “epidemic” which needs to be tackled rather than an opportunity to embrace and improve people’s lives.

In what the United Nations in 2015 called a “human rights crisis,” the focus on cure rather than acceptance and awareness resulted in a community which Silberman described as “one of the largest disenfranchised minorities in the world.” With an estimated 85% unemployment rate, a mortality rate of sometimes 30 years less than the general population, largely driven by suicide and a prevalence towards addiction of vulnerable adults who have never been granted the acceptance in society to make the connections required for a healthy, enabled and satisfying life, it is vitally important that steps to integrate and connect this group with society are made.

In my own life I’m almost grateful for the late diagnosis which allowed me to grow up unhindered by a label society did not understand. While having faced major difficulties in youth and young adulthood, which I now understand were as a result of neurological differences and challenges, I recognize I might not have had the opportunities to grow and experience the things which I have with an earlier diagnosis. That being said, by no means am I ashamed of my autism.

Growing up with a persistent sense of “otherness” and lack of belonging, I was continuously looking for somewhere to fit. The understanding I now have, even if it involves becoming a member of a group who corporately do not conform, is a relief and the answer to a lifelong puzzle. However, stigma and stereotypes still abound, and I feel the constant need to explain myself. I have friends who know more about my neurological processes and reasons for doing, saying or being unable to say things than they know about my preferences in pizza (Franco Manca, if you are buying), comedy, movies, art, literature or music. I don’t want to live in a world where I am forced to persistently second guess and justify myself. I am far more interested in finding out what your superpower of choice would be. Mine, for the record, is mind reading.

I have no desire to spend my life talking about autism, but in recent years the responses I have received, ranging from the utterly dehumanizing, “You can’t be ‘an’ autistic, you’ve been lied to, that is a lie,” “You can’t be autistic because, well, you’re quite funny, aren’t you,” to a former friend who took offense at my having to change plans due to an enablement support session and complained I was letting them down to spend the day being “differently-abled” and a “spastic,” mean I recognize the responsibility I have to work towards reducing stigma and stereotypes. I’m neither mentally challenged nor a savant genius, but I was once told I could not be autistic because a report showed my IQ was too high for me to be “that stupid.”

I recognize the responsibility that as someone classified as a “high-functioning” adult with a relatively regular life, not hindered by the speech and severe neurological difficulties of others like me, I have to speak out and to show the world what autism really is. For a long time this year and last I went through a period of feeling very lost and broken and that not fitting must somehow be my fault. I want to work towards an environment of that not being the case for anyone else.

I realized as I sat in North London watching the result of the EU referendum come in back in June that for a very long time I had been cosseted from what was going on outside of the city by a bubble of cosmopolitanism, a bipartisan result of the liberalism that shrouds the capital. I knew membership of the EU was vitally important to my life and that of my tribe because of the human rights, workers protections and research money enshrined within its membership. The U.K. is already the first country in the world to be investigated by the UN for its treatment of disabled citizens. Given my situation, three months on from that vote I am still very, very scared.

Considering the hidden history of autism and the current world political climate, it is now more important than ever before for those of us on the spectrum to make our voices heard, to advocate and tell the world our complex, multi-faceted and very human stories. It’s our responsibility to fight for every child and adult who struggled before us and for the rights of all those to come, so never again may any person on any spectrum of disability be dehumanized, tortured with invasive therapies, murdered or just ghosted outside of society to fade and disappear.

A common symbol of autism awareness is the missing puzzle piece, used to describe what people believe is a missing part of an autistic person that needs to be found. I refute that. It is not an autistic person who has something missing in them but society which has a missing piece that is the space required for autism to fit and for the neurodiverse to be enabled to flourish.

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This is to you, the parent of a small child at a soft play center we visited today. You were with your friends all enjoying a natter and a cup of tea while watching your small children play.

I’m sorry my daughter was staring at you.

I’m sorry she stood so close.

I’m also sorry that instead of leaving you to it after having stared at you once, she came back time and time again and stood there not speaking, but staring once again.

My child is inquisitive, curious and interested.

little girl smiling

She’s a puzzle of a million pieces that have no edges, no limits, left open for the world to add too, making it a trickery of games.

She’s exhausted and frustrated. She’s confused and puddled. Her mind is like a thousand intertwining rivers, bending like the Mississippi, her thoughts swimming up stream, her mind tiring with each twist and turn the processing takes.

She wanted to speak to you, she wanted to tell you how cute your baby was, she wanted to ask his name, she wondered why he was crying and screaming. And she almost certainly wanted to give him a cuddle and say hello to your beautiful baby boy.

She is not weird. She is interested.

Most of all, though, I am sorry for not being sorry for all those things. The only thing I’m actually sorry for is your attitude.

I’m sorry you felt compelled to raise your eyebrows at your friend and direct them to my child. I’m sorry you had to nudge your other friend and practically point at my child to show her she was staring. Yes, we all saw her, even your friends.

I’m also sorry no one ever taught you how to talk to small children. I’m sorry you were taught to judge small children because they “look” different.

She’s just 6. She isn’t going to bite off your arm.

Next time, set an example. Say hi, and ask her name. If she’s having fun, she may not answer you. She may run off, she may be surprised at the sudden interaction. But at least you’d be leading by example. Maybe you could also kindly teach your own children it’s nice to be nice.

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When I first read the now viral rant of a frustrated parent seeking to establish a secret code to alert other parents when they wanted back-up while their child was having a meltdown – I was left feeling conflicted. I understand it was meant as a joke, but so many aspects of this rant made me uneasy.

I very vividly remember a time, six years ago, when the intervention of another adult was very helpful in resolving a tantrum by my typically developing daughter.

We had just pulled up to preschool, and my daughter was screaming and flaying about because she wanted to carry her Cheerios into her classroom. This could not happen. The more I tried to reason with her the louder her screams became.

I suddenly heard, “Vivian that is not OK.” I looked behind me to see the director of the preschool giving my daughter a very stern look to accompany those words. Within seconds Vivian calmed herself and walked into her classroom.

Before I could leave the building the director pulled me aside. She explained she had intervened because sometimes escalations like that can be stopped when someone who the child is not as comfortable with says something. It definitely seemed to do
the trick in this case.

There were a few things markedly different about this example than the one described in the now viral rant. First, the person intervening was a professional educator who was offering assistance to resolve the situation – she did not use harsh language or use her power as a stranger to scare my child into submission. She simply explained to my daughter that her behavior was not acceptable and would not be tolerated by any adult. I was truly appreciative for her assistance.

Fast forward four years, I am in a crowded bookstore with my daughter, who is nonverbal and on the autism spectrum. I was purchasing books as holiday gifts for my husband’s staff for a party that was to be held that night. I really could not leave even though I saw the signs that my daughter was headed toward a meltdown… an actual meltdown, not a temper tantrum. In my daughter’s case, the crowded environment, bright lights, being warm despite being cold outside, noises from the coffee shop, an inconsistent ringing of cell phones all worked together to create the perfect storm of sensory overload and exhaustion.

When I first noticed she was moving toward a meltdown – I look off her jacket to try and make her more comfortable. I then handed her chew tube and encouraged her to use it for self-calming, but these efforts were not enough. Before I knew it, loud screams were erupting from my normally passive child. She began to kick at everything and nothing. She was violently rocking her body so her head would slam into her stroller. When she thought she was close enough to a shelf she would try to pull down as many books as she could.

This was one of my daughter’s first public meltdowns. The stares of the people around me were turning me to stone. My daughter felt them too because the more people stared, the more anxious she became, the louder she would scream and harder she would thrust her body.

No one offered to help, many people acted like it wasn’t happening, but enough people stopped what they were doing and stared at my daughter. Some even whispered, loudly enough for me to hear, about how I should handle the situation.

I was busy trying to comfort my daughter, just as any mother would when her child was experiencing so much discomfort. Caroline was starting to calm down and regain control of her body when the manager came over and asked me to remove my daughter from the store, as her screams were disrupting other holiday shoppers. I was relatively new to being a special needs parent so I did not know how to respond. I apologized and mumbled something about my daughter having autism –that she wasn’t throwing a tantrum but having a meltdown. The manager looked embarrassed and saw the large list I had in my hand and asked if he could finish gathering the books for me while my daughter and I found a quieter part of the store to wait. I accepted his offer because it was a solution that worked for all of us. Caroline would be able to calm down, my books would be gathered for purchase and other customers would no longer be bothered by Caroline’s meltdown.

But now that I have been around the blocks a few times, I want parents to know that when you see a child having a true meltdown, the best thing to do is not to stare. If you want to help, ask the parent if there is anything you can do. But judgmental looks and harsh words are going to have no affect on my autistic child during a meltdown. And while, they may have an impact on my typically developing child during a tantrum I don’t want her to learn it is OK to speak harshly or give mean looks to someone who struggling – whatever the reason.

I want my daughters to see every opportunity as one to demonstrate understanding and kindness, and the best way to do that is by modeling.  When I see a child having a meltdown or a tantrum, I tell my kids “it looks she is having a hard time.” I frequently ask the parent if there is anything I can do to help while offering a supportive smile. Most times, the parents refuse the help but appreciate the warmth of a smile in the middle of a storm.

I understand the viral rant was meant as a joke. But I want people to understand that jokes like this can lead to a greater level of misunderstanding and escalate true meltdowns. Our job as parents is a hard one, anyway you cut it. And sometimes we do need help from our village, but that help should come for a place of understanding and kindness.

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Image via Thinkstock – monkey business images

I shudder each time I hear a parent talk about some professional who told them their autistic child will never amount to anything. I’m not quite sure what gives these professionals the right to say that to any parent. By professionals I mean teachers, principals, doctors, psychologists, anyone in authority.

No one has the right to tell any parent what they believe a child can or cannot accomplish in their lifetime. I have seen parents take those words to heart and actually believe them, because they came from a professional. Dear parent, take heart and listen up! I’m living proof of why you should never listen to such negative words.

I fell in love with horses at the age of 4. I was obsessed with them. When I was in fifth grade, I begged my mom for riding lessons at a nearby stable. The only problem was that the group lessons were every Friday afternoon starting at 3 p.m. That would mean I’d have to get out of school by 2 p.m. in order to get to the stable on time.

Not diagnosed with autism until age 50, all throughout my school years I was viewed as the “weird” kid, and no one knew what to do with me.

My mom went to talk to the elementary school principal to inquire about me getting out one hour earlier each Friday for the next eight weeks. She took me with her to go talk to him. So there I stood, gingerly peering out from behind my mom as she asked if I could be released from school the one hour earlier each Friday. He calmly smiled and replied, “Sure! Anita’s never going to amount to anything anyway, so it doesn’t matter.” I can remember the rage my mom was in for weeks after that statement. She didn’t believe that for one minute, and simply continued to encourage me to do my best at whatever I chose to do.

As I now have been working the past 28 years as a Certified Registered Nurse Anesthetist, having graduated from Columbia University with my Master’s in Nurse Anesthesia, I can still see that man saying that to my mom. I also became an internationally published military aviation photojournalist, an accomplished equestrienne, and now an internationally recognized autism advocate, author, national speaker, and blogger.

So the next time anyone tells you that your child will never amount to anything, or will never do X, Y, or Z, simply smile at their ignorance. Go home and be your child’s cheerleading squad, their emotional support, and their source of encouragement to be all they can.

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Image via Thinkstock Images

As a traveling musician, I hear a lot of things from a lot of people after a concert. Often it’s about the music, the message, my story, their story… ultimately it’s about how my story connects with their own.

People have lined up to talk for hours along this latest tour, and most of the talk has been encouraging.

Many want to discuss autism, and I’m thrilled to do so – particularly if our talking will help produce understanding for those who know little, and encouragement for those who (by personal experience) know too much too well.

A while back I had a rather (shall we say) “interesting” conversation with a concert attendee. She was in line to get a CD and an autograph. I’d noticed her straining posture and intense focus as she waited her turn. She was clearly watching me – examining my every move, studying my every word, and she seemed puzzled. She seemed extremely puzzled.

When our moment to meet finally arrived she startled me with these words: “Wow! I would never know there’s something wrong with you! You just don’t look like there’s something wrong with you! I’d never have guessed there’s anything wrong with you!”

She repeated various forms, fashions, and facets of that phrase throughout our brief chat.

Honestly, I didn’t quite know what to do or say in response. I wondered if perhaps she expected me to twitch, or twinge, or spontaneously stim on the spot. (Truth be told I was stimming on the spot as my wiggling toes attempted to work their way through the floor of that foyer – a concealed coping method I developed as a child, one that helps me not outwardly flap and flail with the awkward gesticulations that can sometimes bring ridicule from the watching world).

What I finally said in response was: “Uh… thanks…um …I think.”

I then proceeded to try and enlighten her a bit about life in my autistic shoes. The conversation ended positively – though I’m pretty sure there was at least one more “Wow! Who’d’ve thought there’s anything wrong with you?” that made its way from her well-meaning mouth.

I reference that event because I am finding a trend in my own experience as well as in the experiences of others who live life on the “higher functioning” side of the autism spectrum – a trend of misunderstanding.

Dr. Mike Emlet (of CCEF), in talking with my counselor about my case wanted her to know how difficult it can be for those who live on the supposed “upper echelon” of the autism spectrum to find real understanding from our fellow man. Boy, Mike wasn’t just whistlin’ Dixie, and I have a near novelette of tales I could tell from my own experience with this difficulty.

Perhaps it’s hard for folks like me to find understanding because of broad sweeping stereotypical assumptions about how autism outwardly looks. Then, couple those broad sweeping assumptions with what I call the “mist of appearances” – the covering and camouflaging ability that often shrouds the disability for many “high functioning” folks (particularly female folks), and you have a foolproof formula for misunderstanding.

Several years ago I had a correspondence with a professional who works with children with disabilities, many who are on the spectrum. I had posed a couple of questions to her looking for some insight on a particular issue. The response I received was disheartening. Rather than answering any of my questions, I was told there is no such thing as “high-functioning” autism because “autism is not autism without real disability.” She then sent me to a website that would attempt to prove her point.  (Side note: it didn’t.)

Sadly, I have run across this opinion on many occasions since and, as one who lives with this disorder every moment of every day, I am always stupefied by it.

It would seem that an assumption is made (at least in my circumstances) that because I appear pretty “normal” – because I can look you in the eye (a trained response I practiced painfully in group settings as a very young child), speak somewhat soundly, reason rather rationally, and carry on a fairly fluent conversation (things that I have worked my tail off to accomplish and things that take more exhausting effort than I can adequately explain) –  I can’t have a “real” disability, most assuredly not the real disability of autism.

In spite of neurologists, general practitioners, psychologists, psychiatrists, and diagnosticians from the Autism Society all standing behind my official autistic “label” I’ve had people poo poo the whole idea of my being autistic, because I don’t look like their picture of autism.  I don’t meet their mold. I don’t fit their formula. I don’t connect with their conjectured criteria.

I fear their perceived picture is false, and I write this article because I believe it may be time to clarify that image of autism – or at least attempt to funnel out some of the fog.

I write because I am encountering a growing number of people diagnosed with “higher functioning” autism who are, as Liane Willey so brilliantly coined, “pretending to be normal” and who later falter under the façade. Many of us seem to be stuck on some societally structured stage, caroling the outward chorus of coping for the crowds, only to withdraw to our private “green room” where we find ourselves singing the solo of autistic sorrow – isolated and all alone once the public curtain falls. After the “show” we are crashing behind closed doors with the dark depth of our disability – and since few see it, few believe it. 

Friend, if you are reading this, please know those of us who live with this neurological condition in its supposed “higher functioning” form really do face many of the same challenges as those precious souls with more “obviously seen” autism do.

Regardless of our spot on the spectrum, all people with ASD have various social struggles, communicative quandaries, internal neurological manifestations, and external neurological aggravations. At times we wrestle to relate with others, and may find it difficult to dialogue amidst the confusion of conversation.  Many of us are physically undone by the onslaught of sight, sound, smell, taste, and touch as the five senses attempt to travel through the “frayed wire” of our atypical nervous system. We can be unexpectedly overwhelmed by the unplanned instant replay of multiple memories flowing out of our deeply filmographic minds. (It would seem that for some of us there is a pictorial Pandora’s box of our entire lives existing within our brains.) The struggle to properly filter the incoming chaos of the five senses while simultaneously seeking to properly funnel the internal bombardment of Pandora’s pictures can befuddle us and send us into extreme shutdown.

Believe it or not, that “obvious” disability you see in someone at the store, or at your school, or in your church is, at many moments, me (yes, Lori Sealy) behind closed doors. When I leave that concert setting, after singing my songs and sharing stories with all of those lovely listeners (the ones who can’t imagine anything is “wrong” with me) I will crash. I may go catatonic in my car. I may wilt against a wall. I may break in the bathroom. It will happen. It has happened for decades – you just didn’t know it because I was scared to talk about it and ashamed to let it show.

Those head hits you see happening in your loved one who’s been (perhaps uncompassionately) labeled with the “lower functioning” moniker? – been there (since I was a child), done that (throughout my young adulthood), still do it (even as I meander through middle age). I’ve banged my head in hopes of halting the hurt. It’s like a pressure release valve from the physiological fire storm.

The petite mal moments, seizure-like movements, repetitive rhythmic rockings, and forms of frustrating mutism you see exhibited by that precious soul who struggles so severely? – you’ll find them equally true of me when I slip out of your sight.

Those searing stimuli sensations that so many on the spectrum fight through and faint under? – I war with them too. I hear your hair move in the wind (no, really, I do!), and it crinkles and tinkles in my brain. In the core of my being I feel you chewing your food at another table at the far end of the restaurant, and it makes it hard for me to swallow. I am inundated with physical sensations from every sight I see – actually feeling each object that my eyes behold as the visual and tactile wires of my nervous system mysteriously criss cross. A simple touch, hug, or handshake can cause the marrow of my bones to burn. Every ounce of every inch of my body is continually battling this. It is undoing. It is unrelenting.

After a concert one soul said, “Wow!  I would never know there’s something wrong with you.” In an email another uttered: “There’s no such thing as high-functioning autism because autism isn’t autism without real disability.” 

Their words can make me wonder: Is there something “wrong” with me? Do I have a real “disability” amidst all of the “super powers” of my coping ability? Could the “high functioning” autistic banner just be a bunch of bunk?

Silly semantics and awful assumptions aside, the truth is I live with autism.  Yes, they call it “high functioning” autism but they still call it autism. See it or not, there truly is a lot of real disability that dwells inside of me, and inside all those on the spectrum. Some of us just hide the disability fairly well – and perhaps part of the hiding for many of us comes because of the assuming from some of you.

Dear reader, please don’t assume that “high functioning” is synonymous with “fine functioning.”  Some of us work harder than you can ever fathom to get through every minute of every moment.

Please don’t tell your “higher-functioning” friend – “Hey, at least you don’t have it so bad!”  The truth is, all autism has challenges, and those well-meaning words may simply cause your friend to crawl further into his or her coping cave (a terribly lonely place). Please trust me, our challenges can be hard and horrible much of the time, and this disability is often daunting.

There is a reason those who live with autism are said to be more likely to struggle with suicide ideation than those who don’t – a struggle I’ve known all too intimately. A struggle that flows from the fact that some aspects of autism can be awful. (Please know I write this not as a plea for a pity party, I have been met with much mercy in spite of my condition, and for that I give thanks. I write it simply as a fact – a fact that needs to be known.)

My earnest prayer is that this feeble cliff-note confession of my sometimes unseen   disability will be used to spark you to want to know more and understand more about this “high functioning” spot on the spectrum – as well as all spots on the spectrum. All of these spots matter. From that increased understanding may we learn to love more intentionally, live less assumptively, and labor more effectively. 

May my concert conversations continue, and may your own banter begin.

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Let me start off by saying I’m probably easily offended. And I tend to take things personally when I am. However, I feel this time I’m allowed to be offended. I’m allowed to take it personally because it’s a very personal issue, and the joke wasn’t funny. The joke was offensive to me, especially as someone on the autism spectrum.

facebook post about public meltdowns

The text reads:

After listening to a kid scream in Kroger for what felt like hours and seeing the poor mother try her best to keep it together I had a random thought.

There should be a secret signal parents give when they can’t take anymore so a random stranger can mean mug the kid and tell it to shut up. there are three good reasons for this:

1.) The kid will be so shocked they will shut up.

2.) It will reinforce stranger danger.

3.) It will show them, from an early age, that while your parents love you and put up with your shit the rest of the world doesn’t care about you (or your feelings), no matter how cute you are.

I don’t want to judge you as a person. I don’t know you. But I certainly have a first impression based on what I’ve read. My impression is that maybe you don’t know what it’s like to have a meltdown in public. Maybe you don’t understand the situation. Perhaps you were too tired that day to think about it, so I will explain what may have been going on.

I wouldn’t wish a meltdown on anybody.  

It’s not fun for me or the people around me. I try to contain it, but sometimes I just can’t. Imagine being extremely exhausted, not just because it’s been a tough day, but because that’s how you feel at the end of every day.

You don’t have the energy to go anywhere, but you have to, because that’s what your parent needs to do. Imagine hearing the squeaking of the bad wheel on the cart. It’s painful for you, but you are trying to put up with it. Then you walk into a store with extra bright lights. Your eyes are extra sensitive to them, and it hurts to keep them open. But you have to watch where you are going.  

Maybe it’s hard to keep walking, and your feet might hurt because you have low muscle tone. You walk past the soaps and detergent isle, and you can barely breathe because of the mixture of scents in the perfumes. What if you were experiencing all of this, and you were not able to communicate clearly that you have a headache? Some children are nonverbal. And even if they are not, they still have a difficult time expressing themselves because, well, they are kids.

I’m not asking you to apologize. I’m not accusing you of being a horrible person. I’m simply trying to help you understand that what you posted is not funny.  And I want you to understand why.

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