It's usually a good thing to face reality. After all, how can you move forward if you haven't faced up to and truly grasped your present situation? If you're broke, you have no money. If you're a rotten athlete, you'll never make the NBA. And once you face reality, ordinarily, you can realistically gauge your options and make reasonable decisions.
The trouble with autism, however, is that no one really knows what "facing reality" looks like.
Yes, we know that people with autism spectrum disorders have social and communication challenges that are relatively mild, moderate, or severe. Yes, we know that some people with autism have behavioral issues, some have sensory issues, and so forth. We have some statistical information available about employment, housing, and education.
What we don't know, if we're honest, is just what any of that means for any given individual. Parents don't know. Doctors don't know. Teachers don't know.
Will my child with autism learn to speak? Get dressed? Read? Make friends? Get married? Hold down a job? Live independently? While we can make reasonable guesses about these things based on an individual's present functional level, we also know that we can be surprised - for better and for worse. A child who is unable to speak at age six can be highly verbal as an adult. A child who is brilliant but quirky at ten can develop serious anxiety and depression issues as a teen. Autism, if anything, is unpredictable.
The unpredictability of autism is one of the foundations for the many bitter debates within the larger autism community.
On the one hand, we can enjoy the quirks, differences and strengths inherent in autism spectrum disorders, and find ways to build on the positive while accepting that a "cure" is unlikely.
On the other hand, we can note that something like 20% of children who once had an autism spectrum disorder are no longer diagnosable on the spectrum - and energetically pursue the avenues that appear most likely to help our own children become one of that 20% (or, perhaps, even increase the odds of a cure).
The fact is that few of us really choose just one side of the controversy and stick to it. Parents of kids with autism, with very few exceptions, work hard to help their kids overcome challenges, succeed in school and in the community, and live as fully and as richly as possible. Most parents involve their children in at least a few therapies, and the vast majority choose speech, occupational therapy and physical therapy along with at least one autism-oriented therapy such as ABA, Floortime or RDI.
The debate arises when we ask the question - what now? Do we do our best to help our child succeed as a person with autism? Or do we do our best to "recover" our child whatever the odds? The fact is that few families have the resources to do both - and there are only so many hours in the day.
Why is it that we, as a "community," are so uncomfortable with saying "I'll go my way and you go yours?" Why is that we can't come together to advocate for, support and build the academic, therapeutic and community resources we all want?
It seems that autism, at this moment in history, has become a rallying point for much, much bigger and more basic questions than "how can I best help my child in specific agreed-upon ways?"
Autism has become a focal point for debates that are much bigger than the needs of individual children, adults or families. In fact, it has become starting point for debates on huge philosophical questions, among them- "Is modern medicine a boon or a boondoggle?" "is the recent meteoric rise in developmental challenges and learning disabilities among our children an artifact of our culture or our physical environment?" "can we trust science and scientists?" "what, ultimately, does it mean to care for our children and families?"
Is it possible that, if the course of autism were more predictable, we'd be better able to connect with one another? My guess is that the answer is yes. But until we have a better handle on the "reality" of autism, I'm not anticipating any great moment of community kumbayah.
I’d like to provide a voice from the “other side.” I’ve spent the last 30 years opening programs of all kinds for children and adults with a wide range of disabilities, including residences, private schools, and adult day program supports. Many, many of these people have an autism diagnosis, and all of them also have severe intellectual disabilities and significant behavioral disorders. I’ve had the chance to watch what is important in their lives, and the lives of their parents, as they turn 20, then 30, then 50. Here’s what I’ve seen:
Their diagnosis ceases to matter at all. Period. All of the debate over autism simply disappears and what is left is the individual, what makes him happy, and who is in his life. My advice to your readers is to focus their attention not on the diagnosis but on quality of life. Understand what your child absolutely needs in his/her life in order to be happy. Do a life quality plan–put it all in writing. Focus your IEP goals on things like friendship development, social/leisure skills, and extending circles of support. Don’t worry so much about skill acquisition–I’ve rarely seen the ability to tie one’s shoes or eat more neatly make much difference in adults’ life quality. Be sure there are people in your child’s life who are not paid to be there. Find the individual behind the disability and make sure everyone else can find them as well. Be sure “who they are” is in a form (again, like a life quality plan) that can be shared with all of the people who will pass through their life. I applaud and understand all of the efforts of parents and advocates in the autism community, but want them to know that in the final analysis what really matters is that parents have structured things so their child will be happy, however that is defined. I’ve started a new blog for people interested in quality of life across the lifespan for people with significant disabilities at http://www.qandawithdrk.com. Hope you check it out. By the way, I’m also the parent of a son who is 26 and has profound and multiple disabilities, so my thoughts are those of a parent and professional who has been there, done that, and learned some lessons along the way. Thanks for your thoughtful and well-written blog!
I enjoyed reading that. As the saying goes: ‘when you’ve met one person with autism…… you’ve met one person with autism’
Dr. K – THANK YOU for your inspiring post. My fingers are crossed that we can all agree that quality of life, authentic personal connections and opportunities for all are a good thing and something to strive for!
Lisa
How many parents are being honest about what happened in the household since the children were young babies? I know someone who had 2 autistic children that smoked marijuana, sat their kids in front of the TV all day long, gave them McDonalds and Coke at a very young age and also there was abuse between the parents. When are the researchers going to get smart and interview family members to find out the truths??
Dr. K wrote: Be sure there are people in your child’s life who are not paid to be there.
Too often I meet children, teens, and young adults without a single connection beyond parents / family members. These individuals go from therapy to therapy, or at best from activity to activity with strict schedules.
One of the questions I hate to ask, but must, is what happens if the parents can’t be there? Many have no plan for the child in the “what if” (or “what when”) occurs. My wife and my handful of friends are essential. Alone, I’d never remember some important tasks. I could never afford personal assistants to help with everything my family and friends do.
Autism seems to be a magnet for vehemence and anger. This is probably why I find Eastern philosophies interesting. We are both individuals and a community. Without my community, I am nothing, but without me the community is also less. Sadly, we are demanding uniformity of views instead of tolerance for individual views and experiences.
Dr. K wrote: “Be sure there are people in your child’s life who are not paid to be there.” Then C.S. Wyatt wrote: “Too often I meet children, teens, and young adults without a single connection beyond parents / family members. These individuals go from therapy to therapy, or at best from activity to activity with strict schedules.”
I agree C.S., but I’d like to add another perspective. My husband and I refused to overschedule our son and left ample time for him to spend free play time in playgrounds, skiing, swimming, rollerblading, etc. etc. Even so, I would have dearly loved to have been able to ensure him even one legitimate friend; but that simply wasn’t in my power to guarantee for him. Friends have to want to be friends. My son wanted friends, but the other children in the community were the ones who couldn’t seem to get passed the diagnosis. I’m not sure if our community was unique, but the personal experience of it was heartbreaking to say the least.
For our efforts to keep him active in our community, he was cruelly teased and bullied. We couldn’t move… or else we wouldn’t eat and we would lose even the loving support of our other relations (which at times were the only threads that kept us going as a family). As a family, we felt very trapped.
He is making a few friends now that he is an adult; but even in adulthood, many of the persons who did bully him in the past are inclined to still bully him or (marginally better) snub him completely. I don’t really think it all was the fault of my son’s autism. Rampant community bullyism is, IMM, a great social ill; but somehow, sadly, it is autism that “seems to be a magnet for vehemence and anger” in the press.
Malia – when you say “community bullying,” what exactly are you referring to? I know, of course, that bullying occurs in school… but in the community we visit the library, the shops, the bowling alley, the YMCA – and I’ve never seen anything I could legitimately term bullying going on in any of those places. Granted that friendship – real friendship – is elusive for our son, it’s also elusive for many folks not on the spectrum… but at least with community involvement lots of people know our son, and quite a few seem to genuinely like him.
Lisa
I think some places are more cliquey than others… and the city in which I live is actually known to be particularly so. Wealth makes a big difference… it’s a really tough place to be on a ‘blue-collar” income (or even just spending enough on therapies that a person has to drive a 15-year-old car). Gangs and gang-related intimidation and violence are recognized problems here.
Several people I’ve encountered in the community who have moved here from other places have also commented on it to me and I’ve have email conversations with people who have complained about a similar phenomena in other communities, so I don’t believe it is just my imagination.
My son encountered some of the worst bullying trying to participate in community sports-related recreation programs. My oldest sister’s children (none of whom have autism) also had similar difficulties finding community group recreational activities where they felt welcome. Perhaps experience has made me more sensitive to it, but I have honestly overhead children bullying other children at all sorts of sports facilities, in shopping malls, and even outside one of the public libraries.
I should also add that I’m speaking of my son’s same-aged peers, not our older adult friends or other adults in the community – like the various shopkeepers at places we frequented. Many of them here also appeared to genuinely like my son (and still do); however, these people simply do not fill the need my son has to make friends (a need which he has expressed to me on many occasions). Quite simply, he wants a meaningful connection with his same-aged peers.
Malia – you’re right; I wasn’t thinking. We actually moved from a very diverse suburb next to the city (with a fair amount of petty crime) to a smallish town that’s really its own community. Weren’t thinking about the bullying issue at all – just about our preferences in a general way – but it’s been a good choice. We’ve also been homeschooling our son, and found that a lot of homeschooled kids are “quirky” as are their parents… so in a sense, while we’re community-oriented and Tom’s very involved in several things (music, bowling, theater, camp), he’s also somewhat protected simply by virtue of location and size of the community. I should also mention that in a smaller town we KNOW most of the kids’ parents – which may make it tougher to bully!
Lisa
After reading this blog and the related comments, I had a conversation with my 19 year old son about the autistic kids at our Church. We have had participation from kids with severe autism, non-verbal kids (though capable of speech at times), a child who only communicates with a computer, and at least 2 verbal/high functioning kids.
As a whole, these kids are accepted at the Church youth group events. Some were slow or reluctant to be a part or to try to connect but, with time, they came to realize that they were/are accepted. As a social opportunity this is the best I have seen outside of family. However, the verbal/high-functioning kids are the ones who seem to struggle the most. They are SO verbal that they don’t know what not to say, they can be very emotional at times and have a very difficult time processing the feelings or accepting realities of life which make most of us sad at times (like when they have a crush and feelings are not reciprocal). The NT participants (many are teens themselves) do not always know how to respond or help those kids.
My oldest children were fortunate (I think) to have had the opportunity to interact with kids with autism who represent a possibility of what their younger brother might be like someday (our autistic son will be 5 in a few weeks), as well as for having the opportunity to get-to-know, befriend, autistic kids/people. There are a good number of teens in the group who are trying to be a friend to those kids. My feeling is that the only missing link for the autistic kids in our youth group is to have at least one adult person with some expertise to help guide and counsel the kids who are struggling in trying to figure out all of the dynamics as they go.
I have seen one of these kids bullied on facebook – it was horrifying to see. But, afterwards, a small handful of NT kids picked up the pace in trying to be a friend, trying to teach, etc. Because of the youth group, there was a small branch of kids who, as a group, really do care and did make a difference.
I am sure that there are other such groups out there which are not necessarily faith-based. I know Lisa has talked much about Y programs…they also try to teach youth leadership and mentoring skills. I guess my point is that it is beneficial to find activities/small group settings where exceptions in typical youth behavior can be found (outside of the school setting) and can many times thrive (with appropriate guidance and supervision).
Suzanne, that is a wonderful comment. Sometimes it is easy to forget how many good people in this world are doing wonderful things. The newspapers/TV pick up on the terrible stories, and often don’t bother writing about the good ones.
I find myself a bit confused about this article.
“The trouble with autism, however, is that no one really knows what ‘facing reality’ looks like.” All of us face the reality of autism every day! In our homes, our schools… Yes, you can’t make generalizations that hold true for most people with autism. Yes, you can’t predict the future of any individual with autism. But we certainly know what facing the reality of autism looks like.
“The debate arises when we ask the question – what now? Do we do our best to help our child succeed as a person with autism? Or do we do our best to ‘recover’ our child whatever the odds? The fact is that few families have the resources to do both – and there are only so many hours in the day.” “On the one hand, we can enjoy the quirks, differences and strengths inherent in autism spectrum disorders, and find ways to build on the positive while accepting that a ‘cure’ is unlikely.” This is setting up a false dichotomy. All the parents I know who are doing biomedical are also doing therapies such as speech & OT, and are very involved in education and recreation for their children, and are interested in understanding their children as individuals – their children’s wants, needs, interests, what makes them happy… And enjoying their quirks too.
Yes all parents fall somewhere between accepting our kids as they are and trying to make them different – whether by discipline, training, force of will… Probably (IMO) the best parents fall in the middle of this continuum – understanding/accepting their kids and yet also providing a framework of positive expectations, setting limits on behavior etc. but with some flexibility, empathy, listening. But this continuum is not the same as the continuum between those who use biomedical treatments hoping for recovery (or at least improvement in health, happiness, cognitive & social abilities) and those who don’t use biomedical treatments and don’t believe recovery is possible. The biomedical folks are not less accepting and more rigid in their expectations of their kids than the non-biomedical.
I know HFA/Aspies who have benefited considerably from, for example, GFCF diet and vitamin B. This does not mean that they weren’t accepting themselves.
“The unpredictability of autism is one of the foundations for the many bitter debates within the larger autism community.” I don’t think it’s the unpredictability. I think the biggest debates are over causation and treatment.
“Why is it that we, as a ‘community,’ are so uncomfortable with saying ‘I’ll go my way and you go yours?’” I do agree that it is odd and unfortunate that there is not more spirit of “live and let live” and positive, civil discussion instead of rancor.
“Why is that we can’t come together to advocate for, support and build the academic, therapeutic and community resources we all want?” When you said, “The fact is that few families have the resources to do both – and there are only so many hours in the day,” I felt that in relation to their own children’s well being many families do find the resources to do both (helping the child to succeed as a person with autism and working towards recovery as well) – although never to the extent that we wish we could. It really isn’t an either/or. But when you add political activism on top of that, I think parents tend to focus on what is most important to them.
So if a parent saw that their child’s condition was avoidable and was caused by vaccines, that may be where that parent focuses a lot of their advocacy, even though, again, many activists do work on several fronts. But I find it odd that I seem to often hear people who don’t believe in vaccine causation and biomedical treatments say things similar to, “Why can’t we just get together and advocate for better funding of ABA and OT?” as if other parents should just drop the concerns that are not shared by all.
I don’t accept “autism”, I accept brain damage, and until recently explained when asked , that my son was developing normally until his last dtp shot. With the huge number of children being diagnosed as autistic in the community, no one asks anymore, they look at him and know he’s autistic. I don’t know this at all, I know that he is a victim of vaccine damage, however that label “autistic” is one I am hoping will go away. Call it what it is,IMO, vaccine induced brain damage. While I know there are other syndromes that can affect the way one lives daily, I know there are methods of relieving them. ..lithium for bipolar, insulin for diabetes , and on and on. I fully expect once we “face the truth” techniques to treat this will be found and some real healing will begin. As I wouldn’t ask my neighbor who is diabetic to learn to live with it without the help of medication I believe our children shouldn’t learn to live with an ongoing disease process on their own either. I have hope that we will be able halt the brain changes , and if the children are very young they will recover FULLY, if they are older they may have some level of recovery. Time is so wasted when we accept something that we don’t know is “truth”. I look at each of my children, except the unvaccinated baby, and I see some level of damage , and know that the vaccinated children , each of them is a “little” bit different , and shouldn’t be referred to as “normal”…normal is the baby. It’s become a sad “hidden” game, I can pick out the unvaccinated with some strange regularity and I’m not psychic! They are my proof and truth.
Lisa posted this comment on another article, but it appears to be meant for this article:
Twyla – I actually said in the blog that few of us have all-or-nothing (intensive biomed or ignoring the situation) responses to autism. And of course not all of us are political activists – I’d never push for that!
As regards unpredictability, my point (which I think I made) is that we don’t know where our child with autism will wind up. Whether we believe he was injured or genetically programmed or both or neither, we can’t know whether he/she will respond beautifully to our chosen treatments and become “indistinguishable from her peers.” We can’t know whether he will be able to manage independent life.
As a result, WE DON’T KNOW whether we’re facing reality when we say “we have a permanently disabled child,” or whether we’re short changing our child. We DON’T KNOW whether our child will spring forward developmentally if we do x or y. And despite many people disagreeing on this point, I don’t believe we know whether the vast majority of our kids were injured or not, or even to what degree there may be an expansion in the number of actual cases of autism spectrum disorder.
All this uncertainty is very uncomfortable, and many people pick a side based on various events/experiences. Then, we stick to it – despite the very real uncertainty.
Lisa
OK, now I’m even more confused, Lisa, because your comment does not (to me) seem responsive to my intended meaning in my comment — sort of like a “Who’s on first? What’s on second.” conversation.
One of my points was that yes we live with much uncertainty about the future, but none-the-less we do face the “reality” of autism every day.
Yes, it’s impossible to know for sure what treatments of any kind will help, and sometimes even hard to tell whether something is currently helping. It’s impossible to know what our kids will be like in the future. But I guess I don’t see that uncertainty as at the heart of conflicts.
I guess one of the biggest conflicts right now is over whether vaccines cause autism. Some are very certain that they do, and some are very certain that they don’t.
Another of the biggest conflicts is over whether certain treatments are appropriate and work, such as GFCF diet and chelation.
Another of my points was that I feel that your article sets up a false dichotomy between people who accept their children as they are and people who work towards recovery. It’s quite possible to accept your child as he or she is but also work towards addressing medical issues that compromise the quality of that child’s life.
It’s also quite possible to not believe in recovery but also not accept your child as he or she is.
People can disagree about treatment efficacy, but don’t paint those who believe in recovery as being less accepting of their children with autism than those who don’t believe in recovery.
But I do believe we agree that autism is a broad spectrum, that we should respect others’ choices for their children, that there is a lot of uncertainty in everything we do. I am always interested in others’ experiences, and I support everyone’s right to tell their stories, hopefully without passing judgements or assuming that their stories define autism for everyone else.
I should have ended my last comment “…hopefully without passing judgements or assuming that OUR stories define autism for everyone else,” because that is my hope for myself as well – the standard that I hope to meet, and apologize in advance if I ever fail!
I really think there should generally be more civil discourse between people with different opinions and experiences — there’s no reason there can’t be.
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Twyla – yes, yes! most parents, whether they’re biomed believers or not, provide treatment for their kids. And most parents, whether they’re biomed believers or not love and care about their kids.
But if you have no clue where your child is headed, what they need, what will work, what to try – I think it is incredibly difficult to move forward with a sense that “I’m doing my best for my particular child and you’re doing your best for yours.”
Lisa
I didn’t say “no clue” – I said “uncertainty”. There are a lot of clues! And sometimes it is clear what would be good to try, and then whether it is working and whether it is what your child needs — even if you were not completely sure beforehand whether it would help your child.
The uncertainty and controversy are stressful for sure. You asked in a prior column what is stressful, and it stresses me out that biomedical treatments are seen as fringe by many in the mainstream, and that parental observations as simple as “My child changed for the better in XYZ ways after starting the GFCF diet” are automatically discounted by many as placebo effect, subjective, wishful thinking, etc. I just wish that observations by parents and clinicians were the basis for more research on what treatments help which kids.
At any rate, facing the reality of autism means facing the reality that autism is a broad spectrum, and that the future is uncertain. And then we move on, within that uncertain framework.
Unfortunately, facing the reality of autism today also means facing that our health establishment does not want to admit that vaccines sometimes cause autism, and that treatment for vaccine injury sometimes results in recovery from autism. I wish there were more pure, free science unencumbered by so much CYA and “Semmelweiss reflex”.
Never-the-less, if another parent disagrees with me and makes choices for their child based on a different set of beliefs, I have to respect that, and I certainly don’t know what is best for their child! Some kids are helped a lot by biomedical treatments, and some are not. Some parents I know who don’t do biomedical do so much other wonderful stuff with and for their kids, and far be it from me to criticize them. We are all in this together, doing what we can.