Saturday, December 20, 2014

High Functioning People Like You Don’t Speak for My Child!

That is a very common and unfortunate objection to essays describing life on the autism spectrum.  I heard (or read) quite a bit of that in response to my recent column in the MIT Technology Review.  The words seemed to come most often from parents who felt their kids have more major challenges than me.  Much has been written about calling people high functioning or low functioning.  With all respect to you and your situation, I don’t do it anymore and I suggest you don’t either.

It’s not accurate, and it’s degrading to us “high and low functioning people.”  Suggesting that, “you’re a real high functioning autistic” feels to me a lot like “you talk pretty good for a retard.”  People say the former to me all the time today, and they said the latter to me quite a bit 50 years ago.  I didn’t like it then and I don’t like it now.

Both phrases imply I (and all others like me) are pretty good even though we are the “other;” some lesser class of human.  How would you feel about that, if it were you?

The problem with labels like these is that their meaning is insidious and we don’t always catch on right away.  Autistics like me were called retards in casual conversation by all sorts of people in 1965.  That does not happen anywhere near as much today, but phrases like “high or low functioning” have evolved to mean the same thing.  At their inception I don’t think they had a pejorative meaning.  Retard didn’t start as a pejorative either, for that matter.  But both do now.

I used to use those words and phrases myself, before I understood their meaning.  Now I know better.  I used to smile when I was the butt of jokes too. I smiled because I wanted to fit in and be liked, and the others laughed so I laughed too. Now that I understand, I cringe at those memories. I don't laugh at stuff like that anymore.

In 1965 we also used other names for levels of observed intellectual ability.  Moron or idiot, for example.  Those names are problematic for the same reasons. Those of us who are honored with labels like that feel the sting of being less, no matter what our functioning level.  You may claim that I can’t speak for others but I can say this: I have spoken with thousands of autistic people of all intellectual levels and not one has taken issue with that particular statement. Describing us as “less” always hurts.

But it takes time to realize that.  My dad had what my family an "idiot cousin who tended the pigs," back in Georgia.  That’s how everyone described him, growing up, and I pretty much ignored him because I was told, “he didn’t have any truck with people, just pigs.”  Today we would call Bob a non verbal autistic, and we might even find a way for him to communicate.  Sometimes we look back with shame at the things we said and did long ago, but we didn’t know any better.  Now we do, and rather than dismiss people like Bob we try and understand and engage them. 

That's more important today because society has changed. When my dad was a boy it was possible for a nonverbal person to have a life with farm animals and nature, out in the country, and be safe.  That's not so true now.  What we called "the mountain farm" is now a subdivision outside Chattanooga, TN.

We now know that our functional level changes with time and other factors.  As bright and capable as someone like me can seem, I can have meltdowns during which I become essentially nonfunctional and have no more usable intellectual capability that someone with an IQ of 70.  It’s true that is not a lasting condition for me, but it happens, and when it does I would just as soon not be stigmatized for it.

In the longer term many autistics grow up to be far more capable in society than they were as children, especially when compared to their same-age peers. My autistic son, for example, did not read till he was 10.  At age 9 he was in the lowest percentile for several developmental milestones. Now, at age 24, he is near the top.  But that does not mean he is not challenged by autism.  He is; just differently than as a boy.  What some called low functioning became something different through natural processes.

I’ve had the same experience. Psychologists say we learn adaptive strategies.  Neurologists think our brain pathways may develop later.  There are various explanations but they all boil down to this: autism causes developmental delay, and we may therefore be developing and improving much later in life than you might expect.  Many of us experience significant functional improvement in our fourth, fifth, and even sixth decades of life.  That would be unusual for neurotyopicals but it’s common for us.

As an alternative to functioning labels, consider describing someone has having particular challenges or not.  I am very verbal.  Other autistics are non-speaking.  A few don’t communicate successfully at all, in ways we understand, though they may still be trying.  Many of us have medical challenges of very different kinds.  To say that I speak and your son does not is not to call him less.  One day he may speak, and you won’t say that anymore.  Or maybe he will never speak.  You never know with this autism.

I often hear that head-banging, biting, and aggressive behavior sets some autistics apart from me.  Why?  I smashed holes in my walls as a kid, with my head. And I bit. When you ask yourself why we would do that, “being autistic,” is not the answer.  The answer is frustration combined with cognitive challenges.  Communicate with those people successfully, respect them, understand and help with their challenges, and most of those behaviors will moderate.  Do I presume to answer for every single case? Of course not, but I’m confident there is a lot of truth in that philosophy. 

The final issue I’d like to talk about is this: In our society, it is the bright and articulate who find voice in the media, in schools, and in workplaces.  They do that because their skill with words causes others to sit up and listen.  When those articulate people express thoughts about the economy or how we run our schools, we do not knock them down by saying, “Those are high-functioning views. People like my son don’t agree!” 

The autism spectrum contains people of every intellectual level.  Why is it that the bright and articulate autistics are attacked for possessing the ability to speak out about our shared autism? It always surprises me that parents attack me for what seems essentially being different.  I'm not their enemy.   I'm not the only verbal autistic person who's felt that sting.  "You're not a real autistic person.  MY son has real autism." 

When I talk about therapies that are needed, I consistently advocate for research that will benefit people whose cognitive challenges seem very different from my own.  I do that because I believe we have a societal duty to help all autistic people, not just some.  That’s what community is about, folks.  Attacking a community’s articulate members when they advocate for the group won’t help their less articulate brothers.  It just hurts everyone.

There is a valid concern that bears mention.  Autism has such a broad range of affect that your experience as an autistic person may have little or nothing in common with my own.  So I may not know much about your life from the mere fact that we are both autistic.  If I choose to speak up as an autistic person, I feel I have a duty to try and understand the full breadth of autism’s affect so that I can describe our shared spectrum fairly.  While “my spot on the spectrum” is obviously the one I know best, I recognize a duty to “speak my best for all spots” when I raise my voice in public.   I believe this is a general moral obligation that’s shared by anyone who chooses to speak for a common cause.

In closing I'd also like to point out that I have never claimed to speak for you, your child, or any other specific individual.  My words are my own; grounded in my life experience.  The idea that I have a duty to advocate for the breadth of the autism community is not a presumption that I speak for specific individuals.  It's simply a recognition that my words may be broadly interpreted as an "autistic voice" and I should try and make those words helpful and not harmful for autistics as a group.

Obviously the acquisition and dissemination of understanding is an ever-evolving process.  I speak out the best I can today, and when I learn more tomorrow, I will speak then with the benefit of that new knowledge.  That’s all any of us can do.

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 served 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.


Heidi said...

Thank you John. You bring up what needs to be heard. Thanks.

spdpd said...

Marvelous John, well said

Tripped Up Family said...

Shared this. I'm definitely a student of autism and the only knowledge I have of it is as a close observer. I have two 6-year-old daughters with autism who are both mostly non-verbal and significantly delayed.

When people say High or Low Functioning to me lately to describe others with autism, I've been rejecting it as a non-descriptor and inappropriate. Thanks John for this essay that explains it far better than I can.

Lori Pollard said...

As a mom sibling and advocate thank you, very well said!

Phyllis Helm said...

Thank you John! My son is 20 and it has been so bad that someone said he was faking his ASD because he is "high functioning". I have to remind myself that those people have no idea.

marytormey said...

I would like to see John spend more time looking at the research using researchers presumption of superiority to justify discrimination against Autistic people. Please let your knowledge trickle down through the scientific community to parents.
In my opinion neral variation is natural and important. Mice have simple brains and develop quickly. Humans have complex brains and take much longer to reach maturity. Humans with Autism take even longer to develop and can remember significantly more information in detail even from times before they became fully responsive. Why aren't professionals telling parents this?

John Elder Robison said...

Mary, you might be interested in my talk at the last IMFAR autism science conference. IMFAR is the world's principal autism science convention, put on annually by the Institute for Autism Research (INSAR)

Nicole Sanchez said...

I appreciate your post and I understand your need to express your thoughts on this subject. My thoughts on this can only please some of the people some of the time. There are always going to be people out there that don't get the big picture of what you are doing. There are always those that are so wrapped up in their own struggles with autism that they cannot see past them. Their negative comments or statements of "you don't speak for me and my child" are perhaps taken to heart. I wish you would let them roll off and move on. Those comments say more about them than it does about whatever post you write.

I have another author that I follow on Facebook (historical fiction writer, nothing to do with autism). She has sold many millions of books and there is now a TV series based on her book series). There is a lot of love and appreciation expressed on her page, but there are whiners and complainers too and sometimes she addresses them.

I think both you and she should concentrate on the supporters and move forward with your work and interests as you like. The people that are making noise behind the safety of their anonymous keyboard are not worth your time and should not take away from your focus. Your energy should be spent elsewhere.

I appreciate all you do and have followed you for years. If there is something you write that doesn't ring true to me or my situation with my son, it doesn't discount all the other things that do. I take your perspective for what it is, YOUR perspective. And I appreciate you putting yourself out there and sharing it with the world.

Unknown said...

John, thank you for a thought-provoking post. I always learn something from your writing. I don't always agree with everything you say, but I always learn something. [Full disclosure: we exchanged comments with each other in 2012 over a blog post I wrote that referenced a NY Times article about Jack and Kirsten -]

I am the only parent of my now 19yo daughter with autism who is non-verbal. I also am an advocate on state and federal issues and policies that impact persons with autism.

I'm going to focus on autism and my daughter in my comments, but they might apply to almost anyone in any situation. Where the words of anyone speaking about persons with autism become a potential problem for me is when they affect my daughter's choices and her right to freely make informed choices. This is especially real in areas such as housing and employment where I have chosen to devote my second career.

I believe that persons with autism have the human and civil rights to live, work, play, socialize, recreate, learn, love and worship in the setting and manner of their choosing, with the support of their family, friends and caregivers.

People who care about persons with autism should be focusing their efforts on increasing opportunities and decreasing barriers to the settings and resources needed and desired.

The challenge is that too often legislators, advocacy groups and even some self advocates place unequal weight on the words of persons whose viewpoints they consider more authentic by virtue of their ability to articulate them more clearly. Some of these groups (e.g. ASAN) claim to speak for all persons with autism when in fact they only speak for themselves and their membership. Some unfortunately go even further and denigrate viewpoints and voices from the autism community with which they disagree.

To the point of your post, I think often the frustration of parents is that they feel the voices of their more impacted children are not being heard or represented in the larger discourse. I think they fear that the choices available to their children, and the rights to make those choices, will be impacted without their voices being taken into consideration.

I am a persistent and articulate mouthpiece for my daughter and any other person with autism or family member who asks me to express their views because I can. In the area of housing, for example, I co-founded the Coalition for Community Choice ( to provide a platform for other voices to be heard at state and federal levels.

Not every parent has the time, energy, skills, or resources to do this for themselves or their children. Through your abilities and initiative, John, you have achieved a high degree of visibility and authority in the autism community. Your final two paragraphs capture what I feel is the obligation of those of us who have that capacity. Thank you again. Mark Olson

Michael Forbes Wilcox said...

Wonderfully said, John. I especially like your closing comments. We all learn from each other and from experience. Evolution is a great thing.

The only thing I would slightly quibble with is your statement about developmental delay. I would prefer to say developmental difference. Some aspects may be delayed, some may be more rapid. But all are perfectly natural for an autistic. Our challenge is that we live in an NT world that judges our differences as problems, or as you say, "less than."

Acceptance and understanding come slowly, and I greatly appreciate all you do to move that along.

Ruth Bainbridge said...

John, I have spent my whole life so far being overlooked because of my ability to appear "normal" only to come home and fall apart. Ad a result I have caused myself much pain and heartache due to misunderstandings and ignorant mistakes. Now my younger son is going through the same thing. The school thinks he is fine but when he gets home I deal with the fallout. I fear for those ob the spectrum everywhere. Are we going to have to hide even more if who we really are just to stay safe? I live in Newport Oregon where the woman dropped her son off the bridge. I keep seeing more reports of abuse on autistics. What is next? Thank you for being our voice!

CC said...

I am a licensed attorney, and I can't count the number of times I've had to actually show someone a photo of my diagnosis letter or show them my doctorate hanging on my wall. People don't think we're capable of anything, and then they have the effrontery to be outraged when we succeed. It's sad. I very much empathize with the "appearing normal" most of the time.

I too have been attacked for being too "high functioning" to understand "real" autism, and it's just as offensive and rude as someone else being called a r----d. I offer my perspective, and I urge people to listen, because they might find truths about themselves or their autistic loved ones in it. But is my word gospel? Not by a long shot. That said, if it's between my perspective of autism and a neurotypical's, I will assert my right to be heard over theirs, because I live it. It's nonsensical to ask, say, a heterosexual person what life is like for a member of the LGBTQ community. Why would anyone listen to a neurotypical about life with autism, when there are autistics here ready and waiting to speak?

I also love love love the point about the fact that we never claimed to speak for anyone. Unless, of course, we do so explicitly!

I am not always in agreement with what you have to say, but you've earned my respect for putting things simply, concisely and pointedly. My best to you.

71df7b7e-889b-11e4-a283-171cd229acbb said...

This high functioning, low functioning idea makes me wonder, at what point is the cut off? Does somebody right in the middle end up labeled one way or the other simply because of who diagnoses them? One thing I've observed with my son, who's eighteen, is that he continues to gather information and experience and improve in many ways. It seems that while other children adapt and pick up things automatically, people with asd tend to have to see, hear, or observe interactions and add them little by little, if that makes sense. And they only take note of things that directly apply to them. It really gives me hope to read about your son and know my son can keep learning and improving, and not to put limits on what I think he's capable of achieving. I really enjoy reading everything you write.

Keitha Granville said...

LOOK ME IN THE EYE rescued my son - it showed me how to understand him ,and MOST importantly showed him how to understand himself. The world needs people like John to open up discussion, present thoughts, ideas and contribute positively to society in the way that he does so very well. Without him life for many people on the spectrum would be a very idfferent place today. Thank you John.

AppleHelperzMom said...

John,I have a very very verbal son with Asperger's. When he was diagnosed, and I was given books to read, I couldn't read any of them, because they all were so hopeless. To read, "...even might get married!" as if that would be a miracle, was too hard to take in.

Look me in the eye was the first book I read that made me able to look the diagnosis in the eye, and accept it, and not feel it was a doorway to a less-than life.

pensiveaspie said...

As always, I love your beautiful mind, John.

Valerie said...

Change takes time. We have to be/make the change.
When Max was in school, he WANTED to learn. Staff wanted to teach. One teacher said teaching him to multiply & divide was the highlight of his long career in spec.ed. Admin said that's not what we're here for; we have to get him ready to work. Upshot: he's neither ready for a job nor college. He's 24 years old, talks Thomas the Tank Engine, and is eager for 3rd grade. His day service doesn't know what to do with him. There's guys my age at the service who are missing even more, but still there's progress from back when. We must remember that. And together we'll make change for the younger ones.
And maybe we'll even survive ourselves. Somedays i wonder about that.

Jamey Davis said...

thanks for that. well said. i get comments like "you can't have asperger's: you're so (articulate, social, well-mannered, etc)". well, guess what? that's being 43 and the art of mimicry. we change over time. it doesn't mean we haven't faced challenges you can't imagine. thanks again!

forsythia said...

PS. I know you probably have a lot of reading to do, but I think you will like "Thank you, Ms. Ferguson" on my blog:

forsythia said...

Somehow the comment that preceeded my "PS" got lost. What I said was that your writing always helps me understand this issue a little better. I also said I preferred the term "Asperger's" to "high-functioning autism" but that "Asperger's" has fallen out of favor. I'm sorry about that.

Unknown said...

As the parent of a nonverbal adult son with autism, I must say that I have always been deeply impressed and grateful for your advocacy for all individuals with autism.

Teresa Whitcomb said...

Just finished reading your book, Look Me In The Eye. Loved it! thank you so much for sharing your life. I have two boys with autism, a 20 year old and a 6 year old. Both are non-verbal. I hate that high/low functioning crap. It is completely meaningless. There are plenty of nonverbals who have found ways to communicate - Tito, Ido Kedar, Carly Fleischman . . . And guess what? They aren't stupid, they do have feelings, they can think and they have very rich inner lives. I personally think that the people considered "low functioning" have greater sensory/motor problems. If you have severe apraxia and little conscious control over your body, if your sensory system is so dysfunctional that you can't get reliable information from your environment, I think it would be pretty darn hard to form speech. So, as a mom of two who can't speak for themselves, I'm thrilled their are people out there like you who can and do so. Thanks very much!

D Marcotte said...

Thank you so much for articulating what I have been feeling for awhile now. It particularly struck me about not being autistic enough to count. I have a daughter on the spectrum and as a result of our experiences I have created a website to help other families impacted by autism - but I have been reluctant to reach out to others because I am not sure I will be taken seriously. My daughter was diagnosed with aspergers so I our experience has not included many of the issues other families have faced. I want to provide a resource, but I am not sure I am 'qualified.'

tank said...

As I understand this, and having only a Bachelors in Psychology, I fully admit Im no expert, you find the words used to classify the difference between someone like yourself, independently functional without aid (for the most part)versus someone like my cousin who will never be able to leave a "half-way" house and live independently, hurtful. You want to strip us of all language used to categorize how needful someone is of help, how severe their impairment, the height of the hurdles they must leap to successfully navigate a simple day, because words hurt you.

I must admit, I cannot imagine that condition; I was still in the single digits of age when I was forced to accept that people (especially the uneducated and children) are generally cruel, and will find some excuse to insult and denigrate; that the only effective coping strategy was to be "tough enough" that mere words couldnt cause pain. Surprisingly, it wasnt very hard. Indeed, there's even a nursery rhyme they used to teach in pre-school for the purpose. Something about "sticks and stones" if I remember correctly.

Perhaps we should worry less about words, and more about deeds. I would rather see "Uncle Dan" or my cousin raising hogs because he could, and it is productive, that the current nightmare program of half-way houses shopping out these poor souls to fast-food chains like slave labor, keeping most of the check to pay for provided "care", and further impoverishing the already poor.

Indeed, the reason Ive happily turned my back on the entire field is because of the focus on words and other irrelevancies; treating symptoms instead of the disease.

Akhmad Helmi said...


RUTH JONES said...

You should not think this way dear and help your child to overcome this, you can also give your child examples of famous autistic people who never care about what they lack in and did many things in favor of society.

Stephanie said...

I still struggle with the use of those labels. On the one hand, it is a convenient way to differentiate between different impacts. For example, I have a son who is mainstreamed and functions quite well with a wide variety of peers, and I have a son who is nonverbal (and in the process of getting a communication device) but who is also quite intelligent, and I have a son who is in between.

But I got in the habit of using them before I realized that other people were asserting negative connotations to the different phrases.

Your post has me seriously reconsidering the trade-off I'm making with the "convenient" choice.

Kathe said...

My question for you, if we can't differentiate between high and low functioning, how do we identify the children who need the different types of care associated with those delineators? My daughter is having serious social problems, but she doesn't require any interventions for head banging. I want to get her the help that she deserves, but I feel guilty because there are so many children with extreme disabilities that are called "autistic". Getting her diagnosed as "autistic" seems inappropriate. It appears to me that your complaint should be directed at the folks who decided that everyone with autism was in the same "category". On a spectrum somehow. Hence the people's new attachment to high and low functioning. If you were a person who worked with autistic children, wouldn't you want to know what to expect when you begin? It would appear that if we have to give up these new terms because they are being used by small minded people to cast judgement or be cruel--eventually we will run out of terms. Maybe we need to just ignore their disability and do what is best for our children?

robert coyle said...

Well said. NT researchers make NT assumptions. After all we(I'm autistic) autistic people couldn't possibly recognize double blind testing.

Anon England said...

@Kathe: I would point out that those people with diagnoses of Asperger's and/or know those figures that cite the 'autism epidemic'...yeah, they include both of those.