Wednesday, May 14, 2014

Early Intervention Or Not. How Do We Decide?



Jason Wolff from the University of North Carolina at Chapel Hill reported on a study of at-risk infants at the IMFAR 2014 press conference today, and it got me thinking.  At-risk studies follow tykes whose family history suggests they have an elevated risk of being diagnosed on the spectrum.  Researchers hope to learn what sets the at-risk kids who develop autism apart from those who don’t. 

What are we learning, and how are we acting on that?  Are we making the right choices?

He says repetitive behaviors may be one area of difference.  Dr. Wolff found distinctly different repetitive behaviors in the children who were ultimately diagnosed with autism.  These differences showed themselves as early as 12 months.

The excessive repetitive behavior set them apart from other same-age tykes who did not go on to receive autism diagnoses.  The behaviors varied from tyke to tyke, but across the board there was more hand or wing flapping, more spinning, more insistence on sameness, and even more head banging and other self-injurious acts.

Dr. Wolff's work is a major achievement and I applaud both his efforts and his success.  The question is, what next?  In his talk, he said, “the earlier we can pick this up, the earlier we can start intervention.” 

That’s when I perked up my ears.  Picking up distinctive behaviors at 12 months is a great achievement, but is quick suppression the correct answer in every case?  As an autistic adult, I had to wonder.  Ten hours later, I’m still wondering.

If I had a baby banging his head on the floor, I would be looking for intervention tomorrow.  I would be terrified that he’d do himself permanent damage.  But what if he flapped his wings and flew?  I did that, and it never harmed me.  How might I be today, if that behavior were “corrected” through early invention 50-some years ago?

Where do you draw the line between stopping something unhealthy and tolerating or even encouraging natural difference?

Might an early intervention have squashed my creativity before it even sprang into view?  No one can know.  And that is the problem with some of today’s intervention, well meaning as it is, and as vitally important as it is for some kids.  We cannot know how many less-impaired kids are being harmed or stunted though our well-intentioned “corrective” efforts.

We say “every autistic person is unique,” but then we talk about our population as if we are all the same.  “Once we detect the behavior, we apply early intervention.”  There’s not much acceptance and encouragement in that phrase.  Yet those are the emerging bywords for the autism community.  Autism Awareness is becoming Autism Acceptance all over the world.  We're recognizing autism as a disability for many and a gift for some; we're also seeing it as an essential variant of the human genome.  It comes with problems, but it also carries gifts.  We've realized the "disease model" doctors embraced 10 years ago does not really apply.

Today we know that some autistic behavior should not be suppressed.  When we exhibit a behavior, it is for a reason.  People – like other animals – do not do things for no reason at all.  We do what we do because it makes us feel good, stops a hurt, satisfies our hunger, or meets some other need.  It may not be obvious to an outside observer what need is being met, but rest assured, there is one.

Rather than ask “how early can we correct the behavior,” I think we would be better advised to ask, “why does an infant bang his head on the floor?”  I was a head banger, long ago.  Try as I might, I cannot recall for you now what I hoped to achieve by denting the wall in our apartment.  But I know it was a very deliberate action on my part.  Bang.  Reflect.  Bang. At some level, I liked it.  I did it a long time.

If you want to truly stop that kind of behavior, you need to figure out what need it fulfills, and fill that need another way.  Saying, “don’t do that” isn’t an answer.  Interventions for head banging rarely work because people seldom get to the root of the issue – why do we do it?  It’s hard to answer that kind of question because it requires getting into the heads of autistic kids and neurotypical psychologists are ill-equipped for that task by their design.

Then there are the repetitive behaviors that are not obviously harmful.  It’s my belief that autistic behaviors that don’t harm us, and don’t harm others, are best left alone.  Why not let them go?  I agree we should teach kids not to do injurious things.  And we should teach kids not to do things that will get them teased or bullied.  But the rest . . . ?

We are beginning to recognize and embrace neurodiversity, especially among adults.  We see how “different” people bring fire to the world, and we need that fire to bring ideas to a boil and pop them out into the world.  Our goal should not be to stamp it out in infancy.  Rather, the goal should be to tend and nurture the fire-bringer, and keep her from getting burned in the process.

At the same time, we might recognize that some people in the fire-bringer’s family won’t have the gifts of fire, but they will have disability.  How can we relieve such burdens as they may have, while encouraging the unique and special among us?

I want to be absolutely clear on one thing - I am not coming out as an opponent of early intervention. I have seen and heard too many stories of positive transformation of major disability to do that.  I'm just suggesting that early intervention - powerful as it can be for some - is not the answer for every child who shows non-injurious autistic mannerisms.

We have no idea how to predict which infant will develop into a star, and which will be crippled as an adult.  And this isn’t just an autism problem.  We can’t tell that for typical kids either.  We can identify certain serious genetic problems – SHANK 3 mutations for example – that are associated with profound intellectual and physical disability.  But beyond that – when we diagnose by watching things like hand flapping – we have no idea of the future development of those kids.  We’ve no clue how they will turn out.

Deciding when and where to intervene, and how, is getting much harder as the detection tools evolve faster than we can understand their meaning.  Intervention is also complicated when the ethical landscape is shifting.

We can’t lose sight of the fact that some infants growing up with autism will suffer greatly unless we intervene successfully.  But others will be the different quirky people who make the world run.  We can’t wipe out one as we ease the pain of the other.  But we have no idea how to tell them apart, especially at 12 months of age.

I don’t pretend to have the answer to that question.  As I wrote above, there are some genetic markers for very serious disability, but when we move beyond those . . . it’s not much different from predicting the future in any other area.  We can’t do it.

It concerns me that this is not really being discussed as we expand our efforts to detect autism and difference earlier and earlier.  Some of today’s autistic infants are surely the Beethovens and Einsteins of tomorrow.  Where will we be, if we “correct” their trajectories before they even read or write?  We’ll never know what we lost.


How might we start this discussion?


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's co-founder of the TCS Auto Program school and Neurodiversity Scholar in Residence at the College of William & Mary.

12 comments:

Nicole said...

I am a parent, so I speak from this perspective. I do not pretend to understand autistic experiences as I myself am not.

I think it depends on the early intervention that is engaged for the child. My son, by complete blind luck, ended up with a team that was there to focus on him as a whole person - not as autism being something to be viewed as requiring removal from him. They noticed his autism before I did. They helped find his strengths and focused immediately on them to give him tools to work through his weaknesses.

His first ABA provider taught me something I feel mission critical to ask of his team now: If they believe stimming that does not cause him or another harm is something that needs to be excised/stopped, they are NOT part of our team. She showed me how much stimming meant in his world and that it served a important purpose to him. Now it is an integral part of how we move forward.

I fully believe that without this amazing team and Early Intervention, my son and I would both be floundering. They gave me such a thorough start to my education in autism and they gave me such a good place to look at his future from. I know my experience might be unique but I pray it is not -rare-. Autistic kids grow into autistic adults and they all deserve starts like this, surrounded by people who believe in them.

Happy13 said...

My eleven year old is a flapper, hopper, droner. When I ask him why, his response is that it makes him feel good. I asked him how he would feel if someone made him stop. He answered, "Sad." Flap away I say. He's probably one of the happiest young men I know. Why mess with that?

Lori Petro, TEACH through Love said...

Yes! This >> "Today we know that some autistic behavior should not be suppressed. When we exhibit a behavior, it is for a reason.

People – like other animals – do not do things for no reason at all. We do what we do because it makes us feel good, stops a hurt, satisfies our hunger, or meets some other need. It may not be obvious to an outside observer what need is being met, but rest assured, there is one.

Rather than ask “how early can we correct the behavior,” I think we would be better advised to ask, “why does an infant bang his head on the floor?” "

THIS is what I teach my clients (parents + teachers) about all kids. I didn't know I was an Aspie until I was 38. Now I know why I teach parenting, relationships + compassionate communication. Expression must be accepted. I sway when I stand - ... keeps me calm. Behavior = communication / attempt to meet a need. Not a flaw of design.

When we listen to the kids - we learn more.

-Lori @TEACH through Love

Higgle E Piggledy said...

I think it boils down to the type of intervention. Early intervention IS golden. While some of us are resilient by nature (I use us because I am a late diagnosed Aspergian adult) whereas some of us don't have the same emotional strength as even our other spectrum peers, much less their "nypical" peers. IHealthy early intervention should focus nit in integration but toolbox building. It should be whole-person focused, not just deficit focused. It should focus on language/communicative skill building (because a communicative outlet gives us power as individuals to get our needs met or to advocate on behalf of our self-worth and value). It should teach emotional and social education with the underlying premise being "you are worthy as you are and here is how you can
preserve your worth while respecting the worth and culture of both your autistic heritage and that of your NT peers. It should be about manners, safety, health, communication, and self-awareness. It can be done. I know it can because its what we did with our Aspie son. We are not a quiet hands house, however we teach that there is a time and a place for stims or that there are methods for stimming that respect the need for soothing with the enviornmental (read classroom here) need for minimal distractions. We started literally at infanthood. We knew something was *different* from birth although we didn't have a clue what until nine minths or an official Dx until aged 3. My degree is in human development and I was luckily able to empathize well with my son (bedore I understood its because we have similar neurologies). My son is a confidant, EXTREMELY intelligent, well-developed little boy. He was blessed to have early access to understanding himself and his self-awareness is phenomenal for an almost six year old. I only wish I had known myself when I was younger: I wouldnt have suffered from years of perfectionist complex, I wouldnt have been such a self-flagellator if I understood why effort simply wasnt enough to make some things about myself "go away." My marriage is 1000xs better now that my husband and I understand me. I can now understand why I have the anxieties I do and I can go to the roots and fix them. For thirty years, I did not have that luxury. I suffered in turmoil. I can finally understand why jobs that, on paper, were perfect for me made me feel like such a failure. So many years of my pitemtial was lost to anxiety and perfectionism and fear of failure because of my "I'm just not like everyone else" complex. My son, identified and reached early doesn't have to live that way. He can own himself fully, he can learn to accept his natural boundaries as being okay and human and he can play up the strengths he has had the opportumity to explore again and again. No, ealy intervention, when done respectfully (read not Lovaas, not quiet hands, not "teach normal,") is a blessing and indeed a magnificent investment into the potential of a human being.

Brandy Nightingale said...

Fantastic blog, John. I am autistic, and like you, didn't know until I was beyond childhood (35, to be exact). I did a lot of what my family perceived as "strange things" as a kid, but never did they put a label on me, other than "weirdo" which I for some reason took to quite proudly. :0) However, the "weird" things I did weren't harming me physically in any way - well, perhaps the barking like a dog got me bullied a bit, but the threat of biting the kids may have kept them at bay. ;^)

I recently attended an autism conference in Ventura, CA where Temple Grandin and a few others spoke. I wasn't interested in hearing the doctor who went on before her, as he started out discussing how scientist are testing a type of worm children will swallow to "fight autism" and the gut issues. WHAT?! He redeemed himself a tad, though, when talking about my current obsessive discussion of interest - not focusing on the autism label but considering difficulties each individual may have. He shared that in his experience, he'd worked with children who were head-banging (sans Black Sabbath, et al) and the prior doctors had dismissed these children, telling the parents there is nothing he or she can do - the kid's got autism. Parents would then helmet the kids and hope they wouldn't break a window. When taken to him and another doctor, they found several of these children to have excruciating ear infections. They were in a lot of pain. A little girl was self harming by repeatedly hitting herself in the neck. Her doctor in Australia prescribed a cocktail of Rxs that made her zombie-like. When undergoing a trial for a new drug, the drug trial doctor placed a scope down the girl's throat and made the discovery she had no lining in her esophagus! This had gone on for six years - she was in pain! They then treated her for that issue and she never self harmed again, and began speaking for the first time shortly thereafter.

So, to quote you, "Today we know that some autistic behavior should not be suppressed. When we exhibit a behavior, it is for a reason. People – like other animals – do not do things for no reason at all. We do what we do because it makes us feel good, stops a hurt, satisfies our hunger, or meets some other need. It may not be obvious to an outside observer what need is being met, but rest assured, there is one." I agree 100%. I barked like a dog because I related to dogs. My strong senses were very much like those of my German Shepherds at the time. I wanted to protect myself from the other kids, so I barked at them. If one of those dogs suddenly started gnawing on its foot, I dare not say, "He's just a dog. Dogs do that." But I look at the foot, I see if there is a thorn, I ask myself if perhaps he's bored and needs stimulation such as a walk or run, and I take him to the vet to get his/her opinion. We do this with our pets (hopefully) but often don't with our kids. It's time to stop the non-sense and see each individual (autistic or not) as a human with individual needs. Labels create separateness, and makes it easy for others to dismiss entire groups of people without "looking them in the eye" and recognizing the sameness. Time to stop the non-sense.

Thanks for this and for your voice in the matter! :0)

Lynette said...

I don't believe that teaching kids to speak and to focus their attention in any way interferes with creativity. I think plenty of creativity is squelched within our normal educational system.
It is difficult to succeed in the world without language. Higher functioning kids need to learn how to interact with others in order to avoid loneliness in adulthood that can lead to depression and suicidal tendencies. The autistic individual is at much greater risk than the average neurotypical person. Happy kids do not always become happy adults.

Sharon Morris said...

John a good behavioural EI program will always consider the reason underpinning behaviours before intervening. It's referred to as a motivational assessment in the ABA world. Its about working out if sensory, anxiety, communication or some other difficulty is creating the challenging behaviours and so helping to build in skills to manage those challenges. Such as alternative mode of communication, or teaching self regulation strategies and so on. The earlier these types of skills get built in the easier they are to integrate, generalise and use functionally to help mitigate the challenges.
I think most modern EI programs are moving away from the 'removal' of autistic behaviours and towards development of a skills based model. Its particularly important to help those who struggle to communicate verbally to find other effective ways to express their needs and desires, and thereby self advocate.

usethebrains godgiveyou said...

"Experts" cannot agree on what autism is, or how to help it. Does early detection include drugging babies in an experimental fashion, as we do now, and using "behavioral intervention", which is often done cruelly by inadequately trained and emotionally stunted adults?

It's not just a matter of abusing future inventors into oblivion. It's a matter of science over-reaching it's boundaries in a cruel fashion. I will bet my LIFE that a child treated humanely with the natural instincts of the parent (who are not deemed as inadequate, or don't believe themselves to be so...)would be better off than any child under the guidance of experts who go home at 5:00. Parents are discovering things about their children that experts would deny is possible. http://emmashopebook.com/2014/05/07/theories-or-what-does-the-least-damage/

I'm sorry, Mr. Robison...I wish I could be more hopeful about science. They haven't proved a thing to me. When I trusted my instincts, it all fell away, and giving my son the life he deserved became primary.

Uta Frith and Simon Baron Cohen bank on fear to keep their expert opinions in check. Frith is fighting the Markhams, who actually have an autistic child and all the deep love that entails, and she is big into recognizing it early now, fighting to make herself relevant, as she once was, at the expense of children, I feel. She says treating the sensory sensitivities, giving children a quiet environment is the same as treating them like Romanian Orphans...FEAR. And Cohen says autistics have no empathy and put them in a book about evil...as if making others FEAR autistics is relevant. May karma treat them as they deserve to be treated.

You are the most empathetic person I know. Realize that even severely autistic people are capable of beautiful sentience and deserve the best we can give them. I won't even bother to link to the "experts". I fight them as only a simple child of God can...and that's the truth!

trainspotter said...

I think it comes down to "why" you're intervening. Is it to make a person appear less 'disabled' or is it because a behaviour is genuinely damaging or interfering with functioning?

My brother has Aspergers, my daughter has low-verbal Autism/Bipolar1 and I have Bipolar1/OCD. There's a huge difference between my brother's peculiar tics, my daughter's violent head-banging (past tense) and my mania/depression driven episodes (mostly past tense). The challenge is that all of these things are symptoms/coping skills and, as many of us are aware, will reshape themselves into something else if we try to remove them without dealing with (or accepting) the cause.

It's intervention that has allowed my daughter to be the happy, capable girl that she is- but the focus has always been on functioning not fixing. My brother, on the other hand, was practically tortured in the school system and his intervention was an exercise in constant failure. For me, intervention was medication based and that was the difference between me being alive or dead (but my daughter isn't on meds yet because, so far, she can manage without them). Sometimes it's obvious, sometimes it's not.

We all deserve the right to be the best person we can be but never at the expense of losing who we are. Anyone with a diagnosis has to eventually figure out, for themselves, where the label ends and the person begins. The answer to that question is different for all of us.

Lisa said...

Great post, John. I agree with everything you are saying- EI can be a life changer for some in the best possible way, and have little effect on others. My son was diagnosed with Asperger's Syndrome when he was 4 1/2 and I remember feeling guilty at the time that he had not been diagnosed earlier, so he could have benefited from EI. The truth was the nature of his disability was based in his social interactions that he didn't exhibit many "classic" symptoms before the social demands in his world went up. In the years since (he's now 13), he's received a variety of interventions, and, thankfully, I think they have effectively addressed his issues, but have not changed his core being or personality. I've let go of my guilt over his "late" diagnosis- it is what it is!

Karla said...

My son was diagnosed with Asperger's at 7 years old. Before his diagnosis he was miserable, had no coping skills, destroyed property (often his favorite things), injured himself and others. He would do such awful things and I would look in his eyes and not see anger or hate, I saw fear and helplessness. It broke my heart and I had no idea what was wrong or how to reach him.

He didn't need intense therapy or to lose his Aspergian traits. He needed to learn the skills to cope with the melt-downs and being overwhelmed by everything. I needed to learn new ways to parent that met his needs.

I don't think that autistic children need to be "cured" but I do think that giving the parents and kids all the tools they need to create the best environment is essential.

He's 12 now and he is such a great kid. He is hilarious, I think he could be a stand-up comedian if he wants. I'm amazed by his ability to identify that he is feeling overwhelmed and remove himself from the situation before he has a melt-down. Such a small thing for many of us, but for him it's... I don't have the words to explain.

Unknown said...

I think that an "intervention" should happen only when/if there is clear detriment to the child. For example, a kid banging their head against the floor is an issue, but a kid that only headbangs in bed against their mattress or pillow is not.