What’s MSSNG in #Autism? – By John Elder Robison

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John Elder Robison

By John Elder Robison

Yesterday a new hashtag campaign appeared in my Twitter feed – #MSSNG. It seemed to refer to autism, and a new research project. I had an immediate reaction, based on my interpretation of the letters in the context of the autism discussion – I thought, Missing?  Certainly not.  We may be gifted or we may be disabled but we are certainly here.  And we are complete humans.   I posted that right away, and it launched a flurry of discussion.

I wondered what the campaign was about, so I went looking. It’s an initiative by Autism Speaks to sequence the genomes of 10,000 individuals touched by autism.  In my opinion, that is a worthwhile thing to do.  I’ve written before about the value of genetic research.  But it is far from my #1 priority for the autism community. More on the why of that later.

Their choice of a name turned mssng from an announcement of a science initiative to a public relations debacle.  I think it’s seriously misguided on several fronts.

 

First – the community side

Autistic people are not missing.  We have always been here, and we always will. Yet I and many other autistics live with the knowledge that we occupy a world where autism is widely perceived as a disease or defect. I can’t speak for other autistics, but I don’t much care to be seen as diseased or defective. Nor do I like being seen as “missing pieces,” which the name mssng implied.

To say that is not to deny the very real ways autism disables us.  Rather, it’s a simple statement of fact.  Autism is a neurological difference, not a sickness.  As such, it’s here for a reason. Who are we, to second-guess that?  Remediate its disability – sure!  Wipe it from the world – that’s crazy talk, and societal suicide!

I’ll bet every autistic kid in America knows how it feels to be told we were missing some of our marbles growing up, and reminding us of that in the context of a research initiative is at best insensitive and at worst seriously offensive.

It’s not a name I’d have chosen.  I don’t know who did choose it but I’d bet they were not autistic.

An organization run by autistic people would not have made this mistake.  An organization run by non-autistics, autism parents, and autism grandparents DID make this mistake. Or perhaps to them, it’s not a mistake.  It’s just “Some autism parents speaking.”  But that is not what their organization’s name implies.

If “Autism truly Speaks” it by definition does so through autistics. That’s the only way it could speak.

“Autism Observed” is what parents and non-autistics do, and the observers get it wrong a troubling percentage of the time, in the opinion of many who live autism in the first person.

Those are very different things, and we should get our terminology right.

 

Second – the science side. 

The idea of researching autism at its most basic makes sense.  But genetic research is fraught with ethical challenges.  However, that is not its biggest problem here and now

The biggest problem here and now is very simple:  Genetic research is an extremely long-term game. The timeline to start a study like this, make a discovery, translate that to a possible treatment, and then get that treatment tested and FDA approved is 10 years at a minimum, and more likely 20 years.

So this effort won’t help any of the autistic children today.  Benefits may flow from the research one day, but the beneficiaries will be tomorrow’s children. Today’s children will be long grown up, for better of for worse.

What we need right now are therapies to help us be the best we can be, as we actually are.  We need tools to help us overcome physical limitations.  We need solutions for the medical problems that plague many people on the autism spectrum.  Those are things autistic people – child and adult alike – want and need right now.  The range of therapies, tools, treatments, and services needed is long and varied – and largely attainable, given the budget and the focus.

We also want societal change and acceptance.  We want sensory friendly workplaces.  We want jobs shaped to our different abilities.  We want help navigating the education and employment mazes.  We want to be productive members of society.  Those too are things we want and need right now.  They too are attainable given the resolve, budget, and legislation to back it up.

If I were running an autistic-centered autism advocacy organization, I’d be making those things my #1 and #2 priorities.  I wouldn’t be talking genetics until I’d made some really solid progress on my main objectives.  Once I showed the community what I was doing for them today, I’d talk a little about the long term game.

And most of all, I’d be looking around me, at autistic people leading the organization.

I’m a big believer in science, and I absolutely understand that genetics may one day solve the riddle of why some people have spontaneous genetic mutations that lead to severe intellectual disability.  It’s led to some important discoveries and it will surely be key to more. But how many individuals who live with intellectual disability today will be helped by that?  How many autistic job seekers will get a job, thanks to that work?  How many autistic kids who wander dangerously will suddenly become safe?  How many autistics that suffer from anxiety or gastric distress will suddenly relax in comfort? Those are a few of the very real issues autistic people are actually thinking about now, and genetics isn’t one of the answers on tomorrow’s table.

Genetics is important.  But it is not job #1 for this community. Once again, with this effort, we are spending money in the wrong places.  We should not be trying to “solve the autism riddle.”  We should not be “looking for missing pieces of the autism puzzle.”  We should be Helping Autistic People – Right Now.

That is my opinion, and my hope and wish for this holiday season.

Discuss this issue on the forums!

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He’s the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He’s co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia.  The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay may give you food for thought, actually printing and eating it may make you sick.

 

 

21 thoughts on “What’s MSSNG in #Autism? – By John Elder Robison”

    Comments

    • stacylynn on February 6, 2015

      Sometimes I’d like to be missi ng I prefer to be alone

    • Sassafras on February 7, 2015

      It’s obvious to me what is missing – the “I”. As in ME, MYSELF, the person with autism. Autism Speaks doesn’t for me. I agree with John Elder Robison. I find the Twitter hashtag insulting.

      • Kenya on February 9, 2015

        Couldn’t agree more. My opinions on this were exactly the same.

    • elysian1969 on February 9, 2015

      Why not ask those of us who live the life and work the wiring every day? For years of my life I lived with the anxiety and the fear and wondered why it took me so much effort to navigate the world of the “normals.” John is so right in saying that we need to help each other by finding ways to navigate in this foreign world- finding practical strategies for today. Observers can observe all they want, but until you are navigating with my wiring you really can’t understand.

    • hook54321a on February 14, 2015

      If you haven’t already please give the Autism Speaks Facebook page a rating of 1 star, here is the link: https://www.facebook.com/autismspeaks/reviews

    • Dooshka on February 26, 2015

      Yes, I agree with John in many respects. However, I have long sensed something missing in me. It is the empty space inside where autobiographical memory should reside, as well as many of the attributes and skills that seem to make up the neurotypical human being. I view it in the same way that a blind person is missing their sight, or a deaf person their hearing. For me, one consequence of what I lack is that I am confined by the boundary of an often overwhelming present, without the sense of a personal past or a personal future. Who I am, to myself, is what I am doing now. It is bound up solely with the journey I undertake between waking this morning and going to sleep tonight. And tomorrow, I shall try to repeat the patterns that will enable to reconnect with what I know about the person who inhabited my body yesterday. All this some part of me has long known and long come to accept. As Elysian1969 so poignantly expressed it, I also have to accept that even the person closest to me, for all their love and understanding, cannot begin to imagine what my world experience is like. And only as an intellectual concept can I begin to imagine what their world is like. I cannot decode the secret language that binds them to the society of neurotypicals and the unspoken understanding they share. BUT (and it’s a big BUT) I do believe that whatever my deficiencies, indeed perhaps even because of them, I can still make a positive contribution to the lives of others, however their brains are configured, and thereby to humanity in general. My strength and purpose, I believe, lie not in what I have, but what is missing.

      • hughgr on March 19, 2015

        You have written what so many feel but could never have put it so eloquently. There is something missing and I believe the answer it to try and accept and embrace the fact that we are different. There was a time I didn’t understand what was wrong, now I embrace my solitude and time alone.

      • dhcamp on April 17, 2015

        I used to feel like I was missing things. I could not communicate with my peers as others could. I could not understand why what I said was insulting to others, why people got annoyed with me when I discussed things I like and wht I could not figure out if someone was being sarcastic or not. I used to feel like i was missing things from my “toolbox” if you will.
        Then I realized i just had a different set of tools. I realized that I could look at a face and see the difference in the mouth, the squint of the eyes, body posture, vocal tones and even how someone is keeping their arms. All of this adds up to an emotion or state. Using this, what equates to a math problem, I am able to (usually) tell someones state better than a neuro typical. I worked in door to door sales to test myself and was able to do a pretty darned good job.
        Whats my point? There is NOTHING MSSNG! We have a different set of tools to learn. And in some cases, those tools are more effective than NT tools!

    • Weaver42 on February 28, 2015

      Thank you Dooshka for composing such a thoughtful response. I resonate with it deeply.

    • Puzzle on March 17, 2015

      I, too, am bothered by that hashtag. Each of us may be different from neurotypicals, and each in our own ways, but to imply that something is “missing” in us is just insulting.

      I grew up thinking that “normal” parts of me were missing and thinking at times that it was my fault for not having friends or interests the way other kids did. My parents and family struggled my whole life trying to identify what was “wrong” with me and sent me to multiple “autism specialists,” each of whom said I didn’t quite meet the criteria for autism. Apparently back then, children were not being diagnosed with ASD.

      As an adult, I have learned to cope in so many ways despite my ongoing differences and difficulties. I do not consider myself to be deficient or “missing” in the way I am and the way my brain is wired, and I firmly believe that no one with ASD should be made to feel like I did when I was young. I agree so much with John Elder Robison.

    • Lintar on March 17, 2015

      The missing letters in ‘missing’ (the ‘i’) implying that we are incomplete, and are far too ‘handicapped’ to appreciate the world from the first-person persepctive that ‘normal’ people do? What rubbish!

      “It’s an initiative by Autism Speaks…” – Of course, this is what they do best; i.e. misunderstand and marginalise people who are not like the whiny and pathetic parents they actually represent, the very same parents who lack the ability to empathise with those who are not as narrow-minded and self-centred as they are. “Oh, poor me! My son is – the horror, the injustice of it all – autistic!”

      May they all rot in hell.

    • ShyGigyas on April 30, 2015

      That is incredibly insulting, especially coming from an Aspie like me who’s been told for years “We need to get you some social skills”. I mean what are you going to do, purchase them at the store??? On the subject of Autism Speaks I have heard of the organization but I just did not know that they were that infamous.

    • mother0fthree on May 20, 2015

      As the sole parent and ex-wife of two different Aspies, one that is diagnosed and one that refuses to even consider it, I can tell you that what is missing is the support for the families of Aspies. Without me, my son would have had no safe place in the world since he was diagnosed at age 11 (now 14). Just like being on an airplane, I need to put my oxygen mask on first and then take care of him but I am the invisible one and the one missing. I hope that the world can figure this out and stabilize the family and support system for Aspies so that we can find the strength, money and time to find ways to support the Aspies that we love. I refuse to let my son turn out like my ex-husband but at what cost for me?

    • 42nd try on June 14, 2015

      As an Aspie i have battled with every single authority i’ve ever encountered, and lost 99% of the time. I believe this is because people( w. authority especially) don’t want to discuss problems they want to win an argument and while this is of course pointless on so many levels it still is, and will continue to be so until reason as a skill becomes respected again. Fat chance…

    • Mark Foster on July 1, 2015

      This the MSSNG website:

      https://www.mss.ng/

      Mark Foster

    • trayder on August 16, 2015

      I hardly see myself as missing anything. As opposed to those around me, I have a clear and logical notion of cause and effect, I am consistent in what I say and how I say it, if I avoid making eye contact it is largely because I am wary of those who live through their emotions. And finally, I can be quite productive if left alone to actually get at the task.

      I hardly think I am missing anything. I may be resident on a planet on which I am possibly a foreigner but that is a challenge to me to adapt not suggestive of anything lacking in me.

      Trayder

    • IgA on November 1, 2015

      What is missing? — NT understanding of AS.

      I learned that our circulatory system (all creatures with circulation of blood) are not developed based on genetic instructions. Our circulatory system develops using exploratory methods — it isn’t really developing using our genetic code. There are initiation codes, but the actual growth of the arteries, veins, and capillaries occur by a crude method of ‘what functions is kept and what doesn’t become functional is reabsorbed’.

      The definition of function (from the perspective of the developing circulation system foremen) isn’t clear to me though. I only have an undergraduate level of knowledge on this subject.

      With that knowledge, it seems to me that the same occurs with the nervous system. The initiation occurs with genes, but the out growth occurs by exploratory methods. If something becomes functional, then it stays as part of our system, and if it is determined something isn’t functional then it gets destroyed — similar to the webbing between our fingers and toes undergo apoptosis (cell death).

      What if neurodiversity occurs as a consequence to that exploratory systems foremen saying ‘this isn’t needed’ (when it really is needed, but is too slow to become functional). Or they don’t remove parts of the system that needed removing — it accidentally became functional when it should have been discarded — like too many connections in a few areas, or too few in others.

      Structures of the nervous and circulation systems are at work in neurodiversity, but they may not be genetic in nature. It just might be due to the fact those systems develop like an ant colony follows the trail left by scout ants. The fact that AS seems to run in families occurs because the scout ants found food. It Worked before, so it continues to work in siblings — the proliferation of the exploratory methods have genetic component — the balls were let go at the same place, at the same speed, with the same force, like in the game Plinko.

      Sometimes same conditions mean similar outcomes, but not necessarily genetic.

    • IgA on November 1, 2015

      I forgot to add, that there are many possibilities — so many in fact there might not be a way to figure out exactly what causes neurodiversity.

      * Genetic
      * Genetic + other factors = perfect storm
      * Other Factors

      I like the perfect storm idea — it goes with how the Earth is in the Goldie Locks zone in our solar system. We may have developed like the Earth developed.

    • [email protected] on May 1, 2016

      Too many normal people pretend to want to “help” autistic people. But what does this mean? In 1876 the Canadian government passed the Indian Act, a program to take native children away from their families and place them in boarding schools for the purpose of “civilizing” them, teaching them the kind of “social skill” autistic people are taught today, such as beginning every social intercourse with the irrelevant question, “How are you doing?” without specifying how the person is doing what, how to make eye contact, etc. The native children were forbidden to speak their native language in these schools, they were required to dress the “civilized” way, to emulate a culture that presumes itself necessarily superior to the savages whom they were converting to Christianity. Like autistic people, society regarded these children as wild horses that needed to be broken for their own good and made to conform, to become something more socially acceptable than who and what they were. It was no different from the Feminine Boy Project, where a boy was behavior modified by an ABA program to teach him to prefer such masculine toys as football helmets and trucks over dolls. They successfully changed him and he grew up to commit suicide.
      When the “charitable” administrators of the program became frustrated by the native children’s failure to conform perfectly enough to the “superior culture” they were punished, eventually with physical violence and sexual exploitation, “for their own good.”
      Today the same thing happens to autistic adults. The woman who flaps her hands when something excites her is scolded by her co-workers to “act normal” and learn how to go outside for a cigarette break like a normal person would do.
      Arbitrary etiquette becomes a substitute for any serious system of ethics as those “charitable” people scold you for driving the speed limit instead of going 10 mph over like everybody else or they raise hell over how you make people uncomfortable if you do not hold a glass of soda at a party and pretend that you are drinking like everybody else. In short, they want to change you, mold you into their own likeness. You are their project they can be proud to show off to their peers.
      That is why we should not trust those who exclude autistic people from deciding how they presume to pity us and to “help” us. They want to take over and micromanage out lives and “correct” us into thinking the way everybody else thinks and living the way everybody else lives so that the world will reward us by making us successful in life.
      The Canadian program practiced the ultimate sexual violence of forced sterilization of those children who would not conform and society wants to do the same thing by preventing autistic people who cannot conform to a culture that is not superior from decent employment and opportunity to marry and start families. This is consistent with the sexual molestation of institutionalized autistic children and this is why I place society or the system on my personal sex offender registry and assign the credibility of its opinions on what behavior it considers appropriate accordingly. What can society, which dares to tell us how to live, but “Eat your heart out Jerry Sandusky.”

    • oceanrollercoaster on September 13, 2016

      I take MSSNG to mean that I, individuals are missing from Autism campaigns. I think we should be bringing correct knowledge & awareness to the general public, but that Autistics should be behind that movement (I’m sure many of you feel the same).

      The other point I have is that I am against finding the genes for Autism. I believe in the ‘perfect storm’ theory that IgA mentioned. So many medical issues are nature + nurture, so it makes sense that Autism would be too. I am severely concerned that if the genes were found, that fetal genetic testing would be carried out, and potentially Autistic individuals would be aborted purely because of that. Tests can be wrong, and additionally, Autism is not a curse that people should be killed over! I admit there may be some benefits to finding the genes related to Autism, but I don’t think it outweighs the downfalls currently.

    • Lyndsey on August 26, 2019

      I have Asperger’s and have had the unfortunate experience of Alabama’s so called help employ autistic people bs. The programs do not take the individual in to consideration and places them in the first job they can then cut ties as soon as they can. I was first put into a housekeeper job at kohl’s i worked for over a month before I got my first paycheck that I dared not stop working at then they started flip flopping me between night shift and day shift back to back trying to make me quit finally they cut my hours to nothing. All the while I was being harassed by my father to get something else or more hours, every day I would try filling out online application after online application even when I had headaches I would fill out 5 applications then for a break I would watch a 30min anime episode or read one chapter of a manga, somehow my dad only ever came in to check on me during my break and he would get so angry he would yell at me and give me hours long lectures and he had even hit my laptop screen with the but of my step brothers BB gun and had kicked me out of the house making me live in my car. My second job gotten through a different program was working at K Mart, I was constantly shuffled around from one task to another without consideration for what I was good at or not, I started having panic attacks and stress Fevers and eventually had a black out where I lost 5minuits and wet myself, I didn’t know what to do and wasn’t able to get help luckily it was at the very end of my shift and I was able to go home after it, but when I would try to call out sick I would be guilted into coming in regardless of my condition, I would come in with a headache and leave with a migraine that would incapacitate me for the rest of the day. The next job I was able to get was with Chick-fil-A which I thought would be a good job because of how they claimed to be a Christian and family oriented business that would help me grow and give me some support, I was never fast enough and was actually told to cut corners to get my speed up only to then get told that it has to be perfect which caused intense stress and confusion with my internal conflict of my morals being corrupted, finally I broke when I was invited to the Christmas party of all things, I was allowed to bring a spouse and or kids so I brought my fiancé at the time( now my husband) and I also brought home made cookies (made from scratch and it was a special family recipe that was my favorite too) I would not have been able to work up the courage to go without someone I was close to and I am glad I did because nobody really spoke to me at all aside from the manager who by the way cussed in front of me and told me that fiancé didn’t count and I shouldn’t have brought him, you can imagine how bad that hurt me and after about an hour just hoping that at least someone would like my cookies I realize no one had gotten any I wanted to leave but I had become emotionally unstable and had to have my fiancé retrieve my cookies which had been put back away from everything else so no one would have gotten any in the first place I was distraught over it and went into a crying fit so we left, so much for my first Christmas party lol. But I guess it was for the best because when I would get home from work I would pass out for the rest of the day. My last job was a Thai restaurant as a drink waitress working for tips, I liked my boss but again the work was too fast paced for me to handle and I was constantly stressed and anxious having a panic attack whenever I fell behind in getting drinks out or saw a empty glass that even though it was only four hours a day I would pass out when I would get home. Finally I decided to start getting counseling again which I was afraid of because I had counselors that would tell my parents everything that I would tell them which sometimes lead to my parents retaliation for anything negative about them, but I knew I needed help and my husband helped me find one that neither of my parents would have contact with (my dad is a nurse which is why it was difficult) my counselor after the first couple of sessions stated that I wasn’t mentally or emotionally stable enough to work and suggested that I try for disability. I didn’t qualify for Dissability because I hadn’t worked long enough but I supposedly would for ssi. After going through that process I finally got a letter denied for ssi because apparently there are jobs that I can work in in Alabama even with all of my combined issues, chronic headaches and migraines, Trichotillomania (a hair pulling disorder due to stress) black outs, stress fevers, depression, anxiety, crying spells, etc…
      I don’t know what else to do and I can’t seem to find any organization in Alabama that would genuinely help, they push you into jobs that doesn’t suit us or consider our condition or what we are good at and drops us the first chance they get or they toss us into school without help aside from getting us in the door, even if you use my case where I failed a math class 3x in a row they don’t try to figure out why or how they could possibly help rather they just simply sign you up for it again and again while you watch your money go down the drain and you breaking inside because you can’t seem to get what everyone else seems to have no problem with. I am not stupid I know that but there’s somethings that I can’t seem to get no matter how hard I try no matter how many times I try or how many hours I put into it. And yet these programs continue to try to force us autistic people into the normal people molds, and conditioning away from certain things, and are unsupportive of certain areas in general such as art, writing, and environmental stuff. I can’t tell you how many times I have been told don’t go be a starving artist and had my parents destroy my artwork to discourage that route, or I hope that you aren’t wasting your time with trying to write a book you can’t even spell half the words you are trying to use and you will never find someone who would publish that (they don’t even try reading it) and oh you want to work with animals or be a park ranger you need a degree in this or that. All the while I am struggling to get by my parents and siblings are doing the woe is us having to deal with someone with Asperger’s that doesn’t want to work in the medical field or go into the military and doesn’t like make up which breaks my skin out or listen to loud music that gives me headaches or drink alcohol that I find disgusting or wear fashionable clothes that are uncomfortable,……. I apologize that this has turned into a rant I am just at a breaking point and am looking for either help or some sort of understanding because the only person I have right now is my husband who is also struggling because he is a artist in a place where artists are devalued to nothing. And I am sick of people who claim they will help but they aren’t willing to consider you when as an individual when “doing what is best for you” and I am sick of people who claim woe is me for having to “deal with” someone who is autistic or has Asperger’s! And I hate people who want to find out the genes for autism because some of them have openly admitted that they would abort an autistic child If they could, I know abortion has its purpose such as saving the mothers life, but to discriminate against anyone who simply processes things differently is wrong. I hate how they want us to conform rather than for them to allow us to be ourselves and help us find a place where we can be beneficial doing things that we like and are good at. Right now my husband is trying to make his own art studio and has been using it to help me get back into some of the art that I like doing to help me feel some sense of purpose but as a new art studio we don’t have much content yet and as a art studio in any area that doesn’t value art or the work or resources that goes into it, we have difficulty getting work.
      I again apologize for the long rant. in the end I agree that the autism speaks group doesn’t actually care about the people who have autism rather they are just the Whiny people who “unfortunately” have to “deal with” people with autism. And that most groups supposedly made to help people with autism are just half ass-ing it or don’t care and are just in it for tax write offs, while they leave us autistic people high and dry

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