Thursday, December 11, 2014

What’s MSSNG in #Autism?

Me, at age 2. Even then, I was #notmssng (c) 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 definitely here.  And we are complete humans.   I posted that right away, and it launched a flurry of discussion.

My response seems to mirror the prevailing sentiment with respect to this campaign - autistic people are not missing, and nothing is missing from us.  In fact, a counter hashtag had appeared moments after I read it - #NOTMSSNG.

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

As I said in the beginning, 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.  When we consider a piece of research - and much is needed - we should never lose sight of the fact that people need help today, not in ten years.  Basic science is good, but applied engineering gets the roads and dams built. That is a very apt analogy for our situation.

The misjudgments about priorities and the marketing mis-steps have overshadowed the science for now.  That's unfortunate, because the concept behind this latest effort seems to have a lot of merit.  And I'm sure it could have been enthusiastically embraced, had it been presented in the right context, with autistic oversight, and as part of a larger effort whose main thrust was directed more toward deliverable benefits.

So what can we do, to avoid more public relations debacles like this, which hurt us all?  We can bring autistic people into positions of authority in all the agencies who speak for and about the autism community, and who fund research into autism.  If the organizations are guided by autistic thinkers we might all be surprised at where that could lead us.  And believe me, we need answers.  The challenges we face are all too real, and very diverse.

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

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.



33 comments:

SF said...

I think genetic research is very important at this point. My hunch is that we have a number of different things going on that have been lumped together as ASD. I am hoping a genetic survey will help tease out the different strands, and that, in turn, will help us understand how to better help individual kids.

John Elder Robison said...

I agree, genetic research is important. My concern is that there are research issues that are more important, in terms of addressing the issues of people who live with autism today.

Kmarie Audrey said...

Thank you for writing this.

Barbara said...

I understand your position but the way this genetic research being done is actually novel in itself. It's not just one institute but all the institutes are being used. It's like a large crowd funded project but with experts who are already studying the genetics of Autism. These people would be doing it anyway, what they are hoping is that this will speed up the process significantly. I'm excited about it but the fact it's Autism Speaks dims my enthusiasm a lot.

I agree that the other areas need attention too. I am sure the frustration is more that these areas seem to take a backseat to Autism Speaks "finding a cure". We should be doing all right now, not just the genetic portion.

John Elder Robison said...

Barbara, I understand the work is being done in a novel open source way. I agree that is a good idea. As someone involved with funding this research, I would take exception to "already studying the genetics of autism." While it's true that the researchers who will use this database are already studying autism, any open source or collaborative projects would deb newly funded endeavors. That does not detract from its value but it's not a "free ride" by any means. And the question of where we should put the balance of our limited research dollars is a very valid one.

I am absolutely supportive of this. I just think there are more important issues ahead of it.

Thanks for your thoughts

Grubbalski said...

I think what the first commenter said is very reasonable. But when I make this same observation I invariably upset autistic people and parents of more "highly functioning" children than mine. Like just the mention of this invokes this knee jerk reaction, like I'm calling into question the autistic-ness of someone. We all face our own challenges. I just keep my mouth shut these days.

John Elder Robison said...

Grubbalski, I never questioned the importance of genetic research. In fact I stressed it.

But I also made the point that we (the autism community) have a very diverse range of problems most of which will not be addressed through genetics. We need behavioral therapies, technology to help communicate, and a host of other things.

So genetics is valuable. But it's not the centerpiece of a well thought through strategy to serve the community who lives with autism now.

Thanks for your thoughts
John

jonathan said...

John Robison. If you feel so strongly about this and you don't believe that AS spends its money wisely, then why don't you start your own 501(c) run exclusively by autistic people that will fund the types of researcyou feel is more important than genetic research? With the amount of money, power and influence you have I don't think you'd have a problem doing this, though it might be a while before you'd have the amount of capital that AS has. Also, you neglect to list any specifics as to how these things could be done. I'm quite curious, but if they are really obtainable goals in the short term as you say, then you should have no trouble starting a 501(c), getting a lot of people to donate to it and raising the capital so that these goals could be realities. You yourself told me it is better to do something constructive than to tear others down as you seem to be doing to AS and those of us who wish a cure, so perhaps you could consider practicing what your preach.

John Elder Robison said...

Jonathan, I have no interest in starting a nonprofit to fund research. I stated what I thought we could do here:


So what can we do, to avoid more public relations debacles like this, which hurt us all? We can bring autistic people into positions of authority in all the agencies who speak for and about the autism community, and who fund research into autism. If those organizations are guided by autistic thinkers we might all be surprised at where that could lead us. And believe me, we need answers. The challenges we face all all to real, and very diverse.

Thanks for your thoughts

L6 guy said...

John Elder Robinson, I have not read your entire article here or all the posts but I can tell you and I are on about the same page. My younger son has autism. I give him lots of tickles and hugs, we go for bike rides, we have camp fires, he eats it all up! My constant thought over his 17 years on the planet? "Alright! I get to "keep" one of my kids!" The concept of "curebies" has been posed by autistic people themselves. Every person of all types ought to sit down with themselves and figure out just how much they would like someone else to "cure" them, before they consider how they want to "cure" someone else! For instance, I wear glasses, but most of the rest of me does not need a "cure". Beyond that, I'm glad Karl Marx is not around to "cure" me or anything else. To close, people need to be aware that there is such a thing as too much Wonder bread! My son is an much different flavor than that!

Sunshine said...

John, your words are so on point. As a mom of an amazing aspie, teen, I've struggled, alone most times to find resources, in the moment. In real time. When I was first looking for schools and doctors, I went to AS, first thing. What I heard was, not encouraging. I got a packet with no real resources. Never spoke to someone other than a receptionist. Yes it was, 2005, and they were young in their development. But the request for funding and and donations never let up, with no regard to us really needing help.
Yes we need the studies, but it's terribly out of balance with real time resources for families.
I've also said and written, that I hate hearing about the missing piece. I'm not missing a damn thing. It's not ever been my goal to find the piece to make him fit, into a school, a club, a society. My goal has always been to help him know how to advocate for himself, and teach the people around him, who he is, how he learns. I know I'm lucky in that he isn't as challenged as some, but I wouldn't ever want him to be anything other than what he is. He's taught me tolerance and patience.
Thank you for this piece. I'm grateful for you.

Tracie said...

John thank you for your post. I agree with you that so much more needs to be done to help individuals with autism now. Unemployment for those on the spectrum is very high. Getting an education is challenging even with the ADA. These people don't have time to wait on genetic research. It's good to study genetics but not at the expense of helping those who need it right now. Also, as a parent of a son on the spectrum with my own non-profit for individuals with any disability, I just want to say that not all parents of kids with autism make those kinds of mistakes and some even have non-profits that are focused correctly. I include my son and others and get their feedback and do the best I can to help them get what they need. Thank you again for being a prominent voice on ASD.

mountainorbit said...

Isn't Autism Speaks mainly a research based entity? This makes sense to me that they would do (and have been doing) genetic research. The new news here is that Google is providing storage for the immense amount of information created in mapping genome.
In my community, we have a great need for advocacy. Many families do not know what therapies are available to them or how to go about obtaining support. Many supports can also be lacking. Is this a void that AutismSpeaks can fill? Is this one of their tenets of operation? Somehow, yes families and individuals need to be connected with proper supports, therapies and community programs. People need to know their rights.

JJR said...

Big thumbs up for this post; thanks again John Elder for saying this and all the activism you do on behalf of our community.

Sabrina Wille Erickson said...

Thank you for writing this! I like the points you made and I like the arrangement of words you used to express these points.

SarahAnn said...

Why does Autism speaks continually get it so wrong to the point of constantly offensive. It makes you wonder what are their true intentions other than making money off of fear

D Marcotte said...

Great Post John, I couldn't agree more that there are many other priorities than genetics. In fact I was so frustrated with the lack of information available for parents I started a website with a searchable database of providers, organizations and resources. Then I realized my daughter was a teen and switched my focus to helping her (and other teens/ young adults on the spectrum) find the resources they need to live their life to the fullest. My website is www.ASD-DR.com and I would love for you to stop by and check it out. Ideally I hope to get adults on the spectrum involved so that the site becomes by autistics for autistics - but we aren't there yet. Thanks again for a great article.

dasipan12 said...

If they have genetic mapping for biomarkers for Alzhiemers, why not Autism? I don't think it's really that far away.

John Elder Robison said...

dasipan12, I agree. Identification of genetic markers is not far away. It's already happening, in fact.

Greg Primrose said...

To play devil's advocate, if research takes 10 years, we need to start it now. If we keep putting off a long term project, it'll never get done. I def agree that help is needed immediatly, but we also can't ignore what genetics could reveal.

John Elder Robison said...

Greg, you are right. I'm not suggesting we put it off. Rather I am suggesting that other lines of study deserve greater emphasis, and "genetics finding the missing pieces" is not the best theme for a group trying to actually help the community.

Leah King said...

I have a grandson,6 years old, that has autism and I would not try to change him in any way. He is in school and learning, he certainly is not missing. My youngest son was never diagnosis with atuism, although I try many times to have his doctor have him tested but to no avail. My cousin has a degree in psychology and told me that my son has a form of high functioning of Austin, but I can't remember what she said it was. I found him help in speech therapy, physical therapy, etc. He is now a senior in high school and has a 3.0 grade point average. If it wasn't for all the supportive people I found I don't know what would have happen for him and me. So no they are not missing.

Inclusion Teaming Blogspot said...

As you know John, we have a 501c3 working to serve people with autism. We are also working to have people with autism in our leadership.

All our social communication programs include equal numbers of socially challenged and socially skilled peers. Why? Because growth in understanding and skill is needed on both sides--those who have autism and those who don't.

You are a consultant to our board. We look forward to your continued support. Our non-profit will be on GuideStar in January and we hope to make our model available across the country through a trainer of trainers program.

We welcome people with autism to participate in the development of our organization. Find the Social Communication Foundation on FB and the internet :)))

John Elder Robison said...

What you are doing at Inclusion Teaming is an example of therapy thats helps people living with autism right now. That's not a replacement for basic science, but it deserves more emphasis because it's here now, not a generation from now.

Paulene Angela said...

Great post. Such a cute photo John. The guys and girls I work with just want to go to college, they want jobs, something that has meaning in our complex society, where they are needed. Yes real inclusion.

Otis Hears said...

Here Here!
(child, mother and wife of fellow humans with autism)

Roger Kulp said...

Please go look at the followup comment I posted at Harold's blog.It should be up later today.

Roger Kulp said...

I am sorry I had not read your blog before,I will be a reguar here now.

This is a pretty well written piece,but I would like you to address one point.You and I are in agreement that we need to treat the medical problems that go along with autism.But what if the medical problems are caused by the same biochemical imbalance that causes the autism? Thus,if we treat some,or all,of the medical problems,the autism goes away,as long as the biochemical imbalance that causes both the autism and the medical problem continues to be treated.

I,of course,have cerebral folate deficiency.One of the first truly reversable causes of autism.The first tests I had that showed related metabolic problems to this disorder were done on me at age 49,when I started treatment.My diagnosis came three years later.Four years later,I was pretty much no longer autistic.You could have told me at some point in the past,an answer for me would be years off in the future,and it may be for a lot of today's children.

Of course there are many other medical issues that go along with different types of CFD,for me it's mito.The mitochondrial disease is a lot harder to treat than the autism.But my folate related medical issues,like anemia and immune deficiency are every bit as resolved as my autism.

Autism science is moving very fast.It is highly likely there will be other disorders found where both autism and medical problems are caused by the same biochemical imbalance.This is one area that neurodiversity does not want to address,and I am sure is very uncomfortable with.Parallels could be drawn to those who see deafness as an identity,and a part of who they are vs people who choose to have cochlear implants to correct their,or their child's deafness.

Perhaps you could address this point.

John Elder Robison said...

Roger, what you describe is a good example of of what advances in medicine bring on several levels.

By remediating the folate deficiency, you remediate many of your autistic difficulties. In your case those difficulties have a fixable medical basis. But are you "cured of autism?" I don't think so.

Out brains wire and rewire themselves from birth through the process of plasticity. It is that wiring that shapes our thoughts. You can fix a chemical imbalance in your brain overnight, but the non-standard wiring that is a consequence of growing up different will remain.

Could you rewire yourself to be less autistic over time? Sure. That is what you see in me and many other autistic adults. But it's a lifetime process, not a quick fix.

And as you note, you still have a number of medical challenges remaining. We must work one by one to remediate those precisely because there is no systemic cure.

Another thing your post illustrates is that there are many different paths into autism, and they can affect us very differently even though we are diagnosed with one condition - ASD - based on a broad set of behavioral observations. There may not be not much in common between the core of your autism and mine, even though we both acted in similar ways such that doctors gave us the same diagnosis.

That of course shows the great value of biomarker testing when it becomes available, because the treatment for you would be different from anything for me.

Thanks for your thoughts

CC said...

I do not believe that we need genetic research, especially not done by Autism Speaks. That is like asking Nazis to experiment on Jews - and yes, I went there. I will again, if need be.

We need acceptance and understanding. The idea of autism being pathologized and reduced to the point of Down Syndrome, where 90% of children are aborted, is terrifying to me. We can help ameliorate the truly disabling aspects of autism without erasing us. I refuse to countenance eugenics.

forsythia said...

Thank you for writing this. From some of the comments, it looks like North Korea isn't the only place where free speech is unwelcome. I prefer the term "Asperger's" to "high-functioning autism", but it looks like Asperger's is out and HFA is in.

edward nortan said...

You know I also worked on a research project regarding famous autistic people. Through this I came to know about a lot of aspects of autism. Before that I didn’t know that people are that much concerned about Autism.

Sciencey Autism said...

I don't know if genetic research should be done. What I say about our son who has ASD, that we came by this honestly-- meaning that getting the diagnosis we looked back at our own families and parents and even ourselves. There is definitely a genetic component. That saying, why are we told that ASD is on the rise? Is there a environmental issue?

Maybe that is what should be the focus of research.