Autism, Parents, and "Two Kinds of Love"
Monday May 26, 2008
New York Magazine has taken on the issue of Autism Rights in a long, very personal article by Andrew Solomon. I enjoyed the article enormously, if only because I had the opportunity to vicariously watch someone else discover the incredible depth, breadth and intensity of controversy that permeates the autism community. But I also enjoyed Solomon's descriptions of the various players in the community, and his (somewhat flawed but always interesting) analysis of what's "really" going on.
At one point, Solomon made this intriguing statement:
Parents are in a tough place figuring out how to respond. What should be treated, and what left alone? Much of the debate hinges on divergent ideas of love. The vaccine people believe families who don’t accept their hypothesis are neglecting their children; the neurodiverse people believe parents who describe their autistic children as diseased are insulting them.In many ways, I agree with Solomon: assuming that two families are living with children with very similar symptoms, those two families may have completely different views of their children's abilities, disabilities, challenges and charms. They may take very different approaches to treating, educating, and advocating for their children. And to a very great degree, those differences are based, not in science, but in philosophy. Parents are forced to answer - whether overtly or simply through their life choices - some of the very toughest questions:
"Should a person be accepted for who he is, or provided with whatever it takes to help him fit into a cultural norm?"
"Should social acceptance be the most important goal for any human being?"
"Where does acceptance fit into the overall scope of parenthood?"
Where do you stand on this article's message? Do you agree that parents of children with autism are offering two "different kinds of love?" If so - which kind of love do you feel is most appropriate?
Comments
No, it’s not two different kinds of love. I think the author of the article chose the most vocal of the two sides. There is a middle ground. Many of us that saw our kids regress from vaccines love our children as they are, but want to help them feel better. As the children heal their gut issues and other medical issues, they still have that same wonderful personality, they are still the same wonderful kids that we love and adore. However, they become healthier along the way.
So I accept my child for who he/she is. I also see that he/she can use some healing for his/her body to work well, and I help to do that.
It’s difficult to include the neurodiverse people’s beliefs into this since they are many times adults and we are the parents. their point of view would be more appreciated if one could express their thoughts and feelings as a child, looking back than looking at parents and thinking we’re doing this all wrong.
There was no parent handbook that covers this, not for each child with autism. I am sure for the neurodiverse people, their parents also struggled to know exactly the right things to choose and try, when to push and when to stop, and what to believe the causes were and did that really matter to the whole factor of autism and their child. A parent 50 years ago and a parent today, their struggles and emotions are probably just the same.
There is some truth to those who believe the vaccine hypothesis are more forceful with their opinions upon another. I’ve met many over the years and many are very hard to have a conversation with and you can tell some how you’ve come to the conclusion this is not what’s going on with your child, they insists your tests were performed wrong. Then you have parents who could care less of the hypothesis, they just need to make it through the day. However, what ever ones idea’s are pertaining to hypothesis, who really cares if what you’re doing for your own child works for them. The point is, it works for them and there is no science that says the biology of that child will exactly match another in order for those same things to work for another.
Regardless on ones stand of hypothesis, the struggle of choices and emotions are still there for us all. There are no real good answers to the list above, the most important may be personal preference on what they deem is important for their child, as opposed to what I may think per my own child. Everyone will have an answer, but that answer isn’t coming easily, nor will one answer fit all.
A parent 50 years ago and a parent today, their struggles and emotions are probably just the same.
Nah, I wouldn’t say they are the same. Perceptions about “normal” and difference probably change with time. The way difference is dealt with also changes. For example, perceptions about punishment have surely changed. Rates of institutionalization have dropped overall, and so forth.
I wouldn’t expect many autistic adults to want to speak about these things, because it’s hard to remember for one, and because they are private matters.
I think Kassiane has written about her parents, but it didn’t sound like that was a positive experience for her.
The neurodiversity position depends entire, 100%, on the notion that autism is inherited and has no cure. It should be obvious now that this position is totally wrong and autism is caused by gene-environment interaction, and can be treated in a number of ways.
There is no argument and no two sides here, only a mass of parents trying to help their kids and a small group of adults who claim to have Asperger’s and want to speak for all kids with autism. Trying to portray this as some even split of opinion is folly, since no rational parent would forego having their child talk or use the toilet just to follow some political manifesto from wrongplanet.com
“Should a person be accepted for who he is, or provided with whatever it takes to help him fit into a cultural norm?”
The answer totally depends on when one finds out that autism is caused by environmental damage and can be treated. Once one discovers this there can be only one answer… and it is not to “accept” the damage.
Joseph~ I wasn’t speaking about perceptions about “normal”. It was more “parents also struggled to know exactly the right things to choose and try, when to push and when to stop” as I said prior. Interventions and choices will always be ever changing, but the emotion of knowing the ‘right’ choices would still be the same no matter the era be it the choice of an institution or ABA.
There also isn’t one teen that doesn’t complain about their parents, so I’d expect if one could express it, they would
However there are many who do speak about their childhood experiences in a more helping manner while other’s are so critical of the parent and their choices for their child.
yeahright~ autism is caused by gene-environment interaction- maybe for your situation but that’s not the case for ours. Some kids get all the newest interventions out there and still no one knows who will ever talk and who will be potty trained. Some people will always have autism and last I heard, there was no cure, but interventions that can greatly help.
The neurodiversity position depends entire, 100%, on the notion that autism is inherited and has no cure.
That is false, actually. I guess it’s a common misconception. The example I like to use is left-handedness. Would anyone deny that left-handedness is a neurodiversity? I doubt it. Yet, it’s well-known that left-handedness is not very heritable.
The rest of yeahright’s comment is basically an ad-hominem attack that is full of straw-men and demonstrably false assumptions. I don’t believe it’s worth addressing.
Honestly, what two parents think alike anyway? I think if you have a child with autism that you will operate with the same kind of desicion making skills you had before you had a kid with autism. Sometimes you disagree with other parents, sometimes you don’t.
I do think our lives are hard because this life is somewhat new. My son is 19 ,has autism and there is no tradition to be had…no worn path to follow. It’s one darn day at a time. Some days are good and some days plain suck. Some days feel like the stone ages.
I know the future is still very unpredictable but we forge ahead ahead because what are the choices?.
You have to decide what you want to focus your time on.
I try to focus on what the possibilities are and say to myself (and anyone who will listen) if it hasn’t been done before why not now? “Be the change you want to see in the world” . You kind of have to page out of Rosa Parks book. Now, some days Rosa is with me and some days I want to crawl under a rock.
Things can get complicated when you start talking about what works for one kid and what doesn’t.
But we are human and we all have the need to have our opinion.
We also need to know when we are overly stressed and take a break. When you are fed up with the world… take a walk or read a book or something. Yelling at someone or pressing too hard to prove your point and make someone change their mind is silly unless you are in a court of law. I steer clear of arguing and people that do. Topics like this just get people riled up. What is the point?
There is a huge difference between the “neurodiverse” and a person with a severe disability. My child is 5 years old and can not tell me when he is in pain or hungry or sad. He can not communicate his most basic needs or wants. He can not understand that the parking lot at a shopping mall is different from a doctors office so he cries in fear of such simple things. He is the most beautiful little boy I have ever seen. He is usually smiling and happy and I love him more than anything in this world. But I want to help him survive in this world. I do not care about social acceptance. I just want for him to have a life beyond mine. I will not live long enough to take care of him forever. I need for him to learn to care for himself. That is what I am missing in these articles. Where is the concern for the people who can not even tell you they are sick or in pain? What about teaching them LIFE SKILLS? Why are you a bad parent if you want to help your child? Why would anyone not want a cure for this? I do not care about my happiness. I just want for my son to be ok when I am gone. I worry every day about that!
Hi Lisa-
Here is what I posted on the NYT website:
Your article covers so many interesting, debatable and controversial topics that my head is spinning.
I’m a parent of a 13 year old son who has autism and living with his disability has given me a lot
to process over the years. First of all, I want to say how grateful I am for the members of the autism
community who have the ability to communicate so articulately about life with autism. I think of
Stephen Shore, Donna Williams, Deb Linsky and Temple Grandin just to name a few. Their books, speaking
engagements and consultations give parents like myself a peek into the minds of our own children.
They are brave and bold and often stand in the crossfire between the more militant factions that you
refer to in your article.
I agree with the parent, Nash, that you mentioned, who would love nothing more than for her daughter
to be able to grow up and advocate for herself about her own neurodiversity. Unfortunately, many parents
like myself, are working diligently to raise very sick children. I’m talking about the population of spectrum
kids that have seizures, chronic diarrhea, brain inflammation, allergies, anxiety, OCD, eating disorders etc….all
of which greatly interfere with their ability to even give a hoot about neuro-diversity, much less learn their ABCs.
When a child is in such pain, discomfort or distress that they don’t sleep at night, can’t pass a stool,
can’t be safe without a helmut, or can’t stop biting their hands and arms, it would be a very neglectful parent
that would chose to “embrace” the autism and “accept them for who they are”–as I have heard suggested,
and ignore all the signs that point to a biomedical condition. When your baby is sick, no matter how old
he or she is, a parent is going to fight to help them feel better. Forgive me for fighting so hard, but please
step out of the way so I can find the help I need for my son that regularly begs to “please help me feel
better!” If your argument is that we need to accept autism as another way of being, then, yes, I may
get a little feisty. Any mother would. At least a mother who is looking ahead to the day that she has
to drop her child off at a group home. That is not what we want for our children. If we didn’t love them,
adore them, worship them, value them and see huge potential in them, we wouldn’t fight so hard.
We are not expecting them to become “cured” and “perfect”—I for one let go of that long ago. The
personality and character don’t have to disappear just because the medical issues are resolved.
Can’t we accept our children and also want them to be well. The two do not and are not mutually
exclusive.
Shannon Johnson
Co-Founder
www.foggyrock.com
An online social network for the autism community
Sandy,
Very true, not all kids will get better. You’re right on the money about how parents have a hard time deciding on how to treat the problems associated with autism. Maybe a parent can give up trying and accept things if no treatment works. That is different from the neurodiversity position, which is to not do any treatment at all.
As for Mr. “Ad-Hominem” Joseph, Left handedness appears to be a combination of genetic influences (LMMRT1 gene), possible brain damage during deveopment or birth, and even possibly ultrasound. I’m sure some other environmental factors could come into play also, and it would end up being a gene-environment interaction like autism. Question, does handedness run in families? You know the answer but just want to act coy.
The statement still stands. The neurodiversity movement is based on the assumption that autism has always been a “natural” variation in humans and therefore is always in the same percentages - no epidemic at all - see Grinker et al. This would have to mean that it is heritable (assuming similar percentages in different races), unless one wants to think that it is a totally random mutation like left-handedness according to Joseph (research be damned). These must be the type of mutations that don’t require a mutagen of any sort, and don’t confer a selective advantage – there is no way any of our autistic kids would survive without support. The incurable bit is what Neurodiversity likes to say because autism is genetic (heritable) or Joseph’s mutation and one can’t cure what is inherited.. or mutated. Since kids are being treated and are improving, this one falls apart also.
All one needs to do to completely destroy the neorodiversity position is just show one instance of a child becoming autistic from environmental insult. That or show that autism rates are going up. The first one has already been “officially” done with Hannah Poling and unofficially with thousands of other kids, many of which are getting recovered, conincidentally. The second is going to take time, but in 5 years, if the rates keep going up as they are now, there will be no doubt.
Yeahright, you said:
“All one needs to do to completely destroy the neorodiversity position is just show one instance of a child becoming autistic from environmental insult. That or show that autism rates are going up.”
I don’t really agree with this. It assumes that there is ONE form of autism - and that everyone with an autism spectrum disorder fits into a similar box. In fact, there seem to be a variety of different experiences of autism - and while some parents point to regression in their children, others don’t. While some children are physically ill, others aren’t. And on it goes.
It seems to me that there could be a vital neurodiversity community AND a group of people who are treatable through biological means. And there will always be people with relatively mild differences who cherish those differences and would never choose to change them.
Lisa (autism guide)
“Two Kinds of Love?”
Never new this even existed…
I am a mother of a 15 year old young man with autism (diagnosed at 20 mos.), the day he was born I loved him, the day he was diagnosed, I loved him just the same, the day he punched me in the face or had a feces exploration, I still loved him, what parent of a child with autism wouldn’t? This is how we are built, this is who we are. The many, the proud, the chosen!
I would like to just clarify that “controversy” widely comes from those that are not parents of children with autism so why don’t we rephrase this subject to “Two Different Opinions!”
A parent’s assumption is typical based off facts truly at hand in their lives where assumptions from the various players are typically protecting something that they personally take pride in like those representing the FDA (Food & Drug Admin) because everyone needs to make money, right?
We as parents DONT HAVE A DIVERGENCE OF LOVE, who would ever make that statement? We probably love more than we know how because our journey is that much more tumultous. Sure, each and every single parent has a different philosophy and that is because we all have children living in many different areas of the autism spectrum, does that not make sense?
We accept our children for who they are, WE just choose to fight harder to help our children as early as we can, hence (possibly) a brighter future.
“Two Kinds of Love?” how about “Two Different of Opinions?” and the ultimate goal, help for your child or maybe one day a cure or revenue for those making all the big bucks off our kids?
“It seems to me that there could be a vital neurodiversity community AND a group of people who are treatable through biological means. And there will always be people with relatively mild differences who cherish those differences and would never choose to change them.”
You are completely correct here, and I am sure that parents of autistic kids would not care one bit what adults in the neurodiversity movement did. The trouble comes when they try to speak for nonverbal children and try to stop parents from giving treatment to their kids. It’s wrong, especially since treatment can work for some of the kids.
It is one of those movements that is just not going to survive when put to the test in Peoria. Find any parents in Peoria, ask them a theoretical question - if they have an autistic child and know that treatment can help, and see if they will buy the neurodiversity line. Now, one could go and tell these parents that no treatment will help and is futile, but what person would do something like that?
I disagree also that there was two kinds of love. The implication that some parents accept their children the way are sounds like people are looking down at people who want a cure.
I would love my child to be cured if it were at all possible. In the meantime, I do try interventions. No one just accepts any child just the way they are. If we were going to do that, I wouldn’t bother to teach my neurotypical children to go to the toilet, have good manners, learn to read, learn not to hit others, etc.
All kids in every society are taught — I don’t think it’s possible not to try to teach them certain things. And in autism, because there is trouble learning certain things, you spend more time on it if you think it’s important. I see the pride my son has when he learns to do some little thing other kids can do. And I worry because he is not expected to ever be independent. What will happen after I’m gone?
Am a 44 year-old high-functioning autistic man, who is, while having been diagnosed at age 11, relatively new to the on-line debate between the pro-cure and neuro-diversity factions.
From what I’ve seen thus far, I can understand, albeit from the kid’s end, what my mother went through, and what the parents of autistics, Asperger’s Syndrome, and others on the spectrum, just trying to GET anything in the way of services for their children, teen-agers, and yes, adult children.
My mother tried doing this in the Reno-Sparks Nevada area in the 1970’s and ’80’s, and there was precious little to be found for me.
In comparison with what that situation was like then, at first glance, a vastly improved situation depending on which part of the US, or the planet, you’re in.
Raising an autistic or other person on the spectrum is long, hard, exhausting and often frustrating work.
So’s being an autistic person, or who has one of the cousin diagnoses.
Not for the same reasons, not at all.
But, it is frustrating, nonetheless.
Haven’t yet plunged into the neuro-diversity movement’s sites and literature yet, but have an acquaintance of mine who’s the mother of an autistic son who is a believer in it.
From what little I’ve managed to absorb of the credo thus far, my take on it is this; it’s not that autistic and other spectrum people should be simply left alone, because even the highest functioning of us is going to be in need at least some further education and guidance than most so-called neuro-typicals.
That would be foolish and cruel, especially in the cases of the lower-functioning autistics and others who need long-term, if not life-long, treatment and care.
At the same time, there also needs to be a greater understanding that those of us who are higher-functioning also need to be educated, mentored and trained to deal with being in the world, yet not of it.
That means guidance, yes, but it also means having the simple good manners and common decency to listen to us, instead of just talking at us.
To any human being, including disabled people of all conditions and degrees, whether verbal or non-verbal, talking with someone who is non-disabled, rather than being talked AT, is an important part of being treated with even a modicum of respect and good manners.
One of the reasons why some disabled activists, whether autistic or not, are so frustrated and angry, is because of the still, somewhat more subtle than in the past but still present, attitude of “Just do what Mommy-Daddy-Mr. or Ms. Nice Case Worker tells you to do, and keep your mouth shut.”
It is the past use of disabled people, especially children, by groups like the MDA to raise money, by pulling the old show-biz, schmaltz-dreck(sentimental garbage, in Yiddish)tactic of “Look at the poor, poor, crippled kid!!! See how hard his life is!!! So, send us some money so we can cure him!!!”, that is infuriating to me,and, from what little I’ve read and heard about fund-raising strategies and tactics by groups like Autism Speaks and Generation Rescue, some of that sort of nonsense still goes on.
Such strategies infantilise teen-agers and adults with these conditions, and no-one, no-one, with any amount of spirit in them can nor should stand for this long.
Add on to that the recent comments by Michael Savage and Dennis Leary about people with autism and their families, and I think that one can see why some people in the neuro-diversity movement, as well as many parents, including those on the pro-cure side of the debate, are upset and angry, albeit for different reasons.
Any parent of a special needs child, teen-ager or adult who has ever had to deal with an arrogant, condescending professional, whether doctor, social worker, or any other sort, has been frustrated and infuriated by such cavalier treatment of themselves, their opinions and their children and their children’s needs.
Quite understandably so, in my opinion.
But, the same kind of arrogance and disrespect sounds no better coming out of the mouth of a parent, than it does from a professional, whether doctor, social worker, or, in Messrs. Savage and Leary’s cases, “professional liars” to use a small part of an old Elvis Costello lyric line.
Those of us on the spectrum, even if a cure or cures are ever found, need to be listened to, and understood, just as much as parents and siblings of those afflicted do.
It also needs to be understood that, while we are, like neuro-typicals or other disabled people, human beings, we are not entirely the same as you are, and, even with a cure or cures, will never see the world in the same way as others do.
One mayn’t like it at all, but that fact remains.
Likewise, those in the neuro-diversity movement need to understand that neuro-typicals, like able-bodieds in general, don’t see the world from the same reference points, either, and never will, especially if the various partisans in this debate keep trying to score points by rhetorically bashing each other’s skulls in.
There must be mutual respect and understanding, but not necessarily agreement, between the various sides in this debate here, or nothing of any real benefit for those on the spectrum and their families will be done.
Until the precise causes of autism are found, and I have no scientific training, so please take this for what it’s worth, any talk of a cure or cures for autism is mainly guesswork at best and quackery at worst.
In the meantime, the biggest pushes, as far as I am concerned, need to be in getting the best possible treatments and other services available to as many of those on the spectrum and their families as possible.
Until a cure or cures are found, there are a lot of people out there, Yours Truly included, who have these conditions,in varying degrees, and who have to live with them.
Some need far less in the way of attention and services, and some far more, and there are also many who need something, anything, at all that will, at the very least, greatly improve the lives of those afflicted and their families.
Arguing about causes of autism, and whether or not there is only one form of being human(What is this??? An episode of “Highlander”, in which there can be “only one???”),as opposed to there possibly being others(We are all human, when it comes right down to it)only takes away time and energy from the tasks of getting the best possible treatments and other resources to those people on the spectrum and their families, and finding out the precise causes of autism, so there can be better, more effective treatments and cures available to future generations.
Those matter most; everything else is just so much philosophical debate and speculation, and doesn’t, to use an old saying, feed the bulldog, much less get anything substantial done.
If I am not able to convince you, and the chances are that at least some of you reading this won’t be, I would hope that what I’ve written here will be at least some food for thought, and, I hope, constructive action.
We can’t do anything about these problems, if we are constantly at each other’s throats, except to cause more bad feeling amongst ourselves and get nothing of any value done.
Point-scoring’s for basketball and football, and doesn’t work in real life.