Sunday, 17 February 2008

Clear Blue Water

Karen Montague-Reyes writes a comic strip Clear Blue Water about family life with Seth a young autistic boy who headbangs. Ive been following it for a few weeks now (ive had a few reservations but as i know its only a comic Ive let them go). But yesterday I was saddened to read the above strip so i wrote to Karen.

Dear Karen
I have a 19 year old non verbal autistic son who head bangs, so I was delighted when I was told of your comic strip as I thought what a great way to raise the profile of autism.
So I was very sad to read in today’s strip that in a perfect world Seth would be fine.
Autism is fine! My son is fine, I love every autistic inch of him. And im sure autistic people themselves who read this would be very upset.
Its the unaccepting world that isn’t fine.
I and many other parents work very hard to try and raise awareness in a positive way. Couldn’t you use your gift as a comic strip writer to help people to see that the many autistic kids and adults are wonderful and loved for who they are?
Thank you

And this was Karen's prompt reply;

You make a good point. I certainly didn't mean to make anyone with autism feel badly about themselves. I have a 12 year old severely autistic son, and I have a different perspective than yours. I love him with all my heart, but if I could take his autism away tomorrow I would do it. My son is not fine the way he is. His quality of life is very low, so in my perfect world, my son would be healed of autism. I realize this is never going to happen, and we love and accept him as he is right now, but this doesn't change my feelings.

There is a split in the autism community about this, as you must know. Some folks agree more with you, and some more with me. However, I can only write my comic strip from my own point of view, which is, of course, what I did here.

I am not saying all autism spectrum disorders are bad. I have a few family members with Aspergers and they are not disabled, in fact they seem to have many wonderful gifts. I also know a few high functioning autistic people and I feel about them the same way. It's not a bad way to be, it's just a different way to be. Perfectly fine. But low-functioning autism is terrible, not to put too fine of a point on it.

I'm all for raising awareness in a positive way though, and I can certainly get behind that. In fact, that is my entire point for putting autism in my strip in the first place. I think we'll have to agree to disagree about this issue. Your son sounds very lucky to have such a loving mother.
Take care.
Karen

Whilst surfing for Karen’s email I also came across this discussion about the strip.

63 comments:

the mother of this lot said...

I read your posts and the discussion, and I couldn't begin to say where I would stand on this one. I can see both points of view.

But I do agree with Karen that C is very lucky to have such a wonderful mother.

Mima said...

This really made me think, in a perfect world I would be shed of my illnesses, not a single question about it, yet I struggle to be accepted as I am, warts and all, and for people to try and understand some of the struggles that I go through. But it has changed me, and if I could cure myself, I still wouldn't want to go back to the person that I was before, I would want to keep the changes to how I feel about things. I have learnt to cherish my friends and family so much more, and I have learnt so much about myself that I never would have known.

And it must be so much more difficult with autism, and as someone who has no experience I would hate to even comment, but I will be really interested to come back and read all the comments in a few days time.

Elissa said...

Thanks Casdok for this post... I have to say that after I read the post and the discussion link, I had to walk away from the computer for a while and gather my thoughts.
I understand that everyone has different opinions and views, and I would never want to deny anyone of that, but I have to say that I have concerns over the comic strip... and the potential that it has to yet again turn autism into a 'freakshow' or a 'save us from autism' campaign.
With a diagnosis of autism there is often 'stuff' to work through... I know and understand this... but I don't believe that a comic strip is really the right forum to be airing such negative views.
Think of the audience that the comic strip is reaching... how much fear, judgement and separation is it causing with the majority of the population who have very little understanding of autism.
I love my Jack just as he is... and in terms of portraying my view as a mother... the comic strip doesn't even come close.
Thanks again Cas for the post.

Norah said...

I can think of quite a few 'low functioning' autistics that would have some serious words with that Karen about how terrible 'low functioning' autism is.

I could put quite a few strong statements in here now, but seeing the civil tone of your post and both your replies to each other, I'll let it pass. Let's just say I won't go anywhere near that comic.

Hammer said...

I agree with your sentiment. All of my kids have disabilities and I still love everything about them.

Despite this, we are trying everything in our power to get them therepy, counseling, medication to get them as mainstreamed as possible.

The reason being is my wife and I won't live forever and I don't know or trust anyone to care for my children like I do.

Jen said...

In my opinion I think that this is one of the critical questions that parents and autistic people face from the moment that they are first diagnosed. I'm very much in the camp who celebrates my children, and tries to gear our therapy/choices to enable them to have as fulfilling a life as possible without trying to "cure" them.

I have kids on different parts of the spectrum, and I love all of them for who they are (which includes the autism). But I do find myself wishing sometimes that my "low-functioning" son's self-injurious behaviours just weren't there...yes, he would be a different child, but it would also be nice not to have to watch him hurt himself so often (or attack other people for that matter), or even have him be able to live at home with us. So we try to do what we can to help him avoid those behaviours and understand why they're happening, but I can't say that I don't have days when I wish that he just wasn't autistic so that he wouldn't have to face the challenges that he does.

So I guess that I'm kind of caught in contradictions at times...I wouldn't change my kids at all, except when I would :-)

Congratulations on a civil dialogue- that seems to be increasingly rare these days. I thought that the old days of fighting over ABA and Secretin were bad, but they sure don't hold a candle to what's going on with the divisions in the "autism world" now.

Vi said...

I think you both have good points. Yep, as karen said, I guess you'll have to agree to disagree.

Honeysuckle said...

I don't really know what to think about the comic strip - I can't deny there's been a lot of black humour flying around our household for the last 18 years, but that's slightly different I suppose to it being presented in public as entertainment
But...is autism fine? I don't know. I wouldn't swop my son for anything - not for any perfect and well-behaved other son. But would I swop him for the boy he would've been without the brain damage? Yes, probably. For his sake as well as ours. Given the chance of a son who could feel better about himself; who didn't take every tiny misfortune so personally; who didn't invite abuse from strangers by screaming at them; who wasn't so vulnerable because he has no real sense of danger and can't tell when others are about to blow their tops...etc, etc, etc?
I love him as he is but, yes, I'd go for that.

Odat said...

Good for you that you wrote to her...and even greater that she responded! Just shows what a loving mother you are to 'C'....and it shows!
Peace

buffalodickdy said...

I have lived long enough to have seen we all have something wrong with us, temporary or permanent. The temorarys get some hope, the permanents have to come to level they can deal with as best they can. Quality of life is better than quantity, sometimes ours to take, sometimes ours to give...No one agrees on everything- what kind of a world would that be?

DJ Kirkby said...

I think she sounds like a sensible woman who has put a lot of thought into what she does. I think she deserves as much freedom of speech as we would give to anyone else who had views which we felt were different to ours. She is entitled to her opinion about autism and how it affects her life and that is what her comic strip is based on.

Maggie May said...

I'm afraid my eyesight is not good enough to read the comic strip even with a magnifying glass, but the problem seems to be, with any disability, the worry of what will happen to the child when you "go". I used to work for years in a special school, so this cropped up a lot. So although these kids are much loved as they are, because of the dependancy & the worry for parents it is always better if they could be cured! Only my view & please don't take offense.

motherx said...

I can see both sides on this and do think you are a wonderful positive person. From a personal point of view I have to agree with Karen. I do love my children 100 percent but would do anything for them not to suffer with autism. Hope this doesnt offend anyone, just a personal opin.

mayfly said...

In the main I agree with Karen. Low-functioning autism has a clinical definition. It takes an IQ below 70 to qualify as well as meeting the DSM-IV criteria. My child's IQ a few years ago was estimated at between 28 and 51. She well meets all the DSM-IV criteria the AD/R criteria and all the other tests to determine the "severity" of autism.

I don't believe her quality of life is low. She has a very loving home. She's in a very good program at school. Each Sunday, she goes to a class for special needs children at our church. She goes to autism camp in the summer.

On the other hand she has no friends, nor is at all interested in making them. At nearly 11 she is not potty-trained. She is not only non-verbal, but has only limited means of communication. When she is thirsty, she brings us a glass. She has no idea of how to cross a street, should she get out of the house, it is doubtful she would be able to find her way back. She is almost completely apathetic when it comes to learning. She has pica. Our house is still baby-proofed and we have alarms on the outside doors.

What this portends for the future is the great worry. What will happen when we can no longer care for her. It is this fear, that makes us greatly wish we could take her autism away.

There is one place where I do agree with Karen where her quality of life is low, that is in hr lack of friends. Just because she doesn't realize it, does not make it so. Friends may complicate life, but they never subtract from its quality.

I find Norah's response puzzling. "I can think of quite a few 'low functioning' autistics that would have some serious words with that Karen about how terrible 'low functioning' autism is."

I say,if they are capable of serious words, they are not low-functioning autistics. The debate becomes impossible if people do not even agree on the definition.

My daughter surprised me last night. For the zillionth time I was reading "Good Night Moon" to her and askng where things were. The only thing she points to correctly is the "red balloon." But this time she got the "red balloon", the "cow jumping over the moon", " the "three little bears sitting in chairs", "and the two little kittens," What was even more amazing was she said in a very soft whisper, "Here", as she pointed. This from a child we hadn't heard a word from in months. Oh, sweet joy!

The next time through she was back to seemingly only knowing the red balloon and was silent once more.

We know both the joys and yes pains of raising a child with low-functioning autism. Looking at her future, she would be much better off without the disorder. I cannot even fathom that there are people who think otherwise; just as I cannot fathom there are people who believe having a low-functioning autistic child distracts from their quality of life.

Crystal Jigsaw said...

Why would someone want to create a comic strip about a disability? Are we supposed to laugh at the fact that our children struggle in the real world? Is it amusing to know that autism is such a complex issue that we spend our lives fighting for our kids' rights?

I can see a little of Karen's reasoning and to know that she has a 12 yr old son with autism does pose questions that she could just be in denial of his needs.

But I am sure she's a great parent too, just like we all are. I am sure she loves her autistic child just like the rest of us do our own. And I am sure when push comes to shove, she would rather have him in her life, than not.

Crystal xx

Mrs. C said...

Not gonna hijack your blog, but I have my own post linked to yours. I went on and on for about three days.

Angela said...

I think I would be a basket case if I couldn't see the humor in Autism. I like Karen's strip...I think she does a good job of saying the things that many only dare to briefly think about. People need to lighten up a bit and take it for what it is...a release that allows her to lighten the enormity of Autism while making people feel like it is okay to have those passing thoughts. Thanks for the great post!!

Cheri said...

My son doesn't want his autism cured. He wants to be accepted as the person he is. Is his life easy? No. Does his autism stand in the way of achieving some of his goals? Yes. Has his autim caused him to find himself in danger for lack of understanding social situations completely? Yes. Can anyone say their life is easy, that they easily achieve all of their goals and have never found themselves in danger for misreading social cues?

How many parents out there can say their children have lived perfect, easy lives and have followed the path of total, unencumbered success? All parents find the most difficulty accepting their children when their children fail to live up to parental expectations. Not everyone goes to Harvard,becomes a doctor, is straight, gets married or pops out grandkids.

It is obvious that not even those exposed daily to autism understand it. There is no mention what-so-ever of IQ in the DSMIV for autism diagnosis. My son has been tested and given a score below 70. I have yet to find an IQ test that is not skewed against autism. They inevitably require social skills that most autistic people lack.

Still, he functions quite well, and is very vocal about how he sees his place in this world, and how others (like Karen) misrepresent to the populace what autism really is. His life would be easier and happier if the world could see him as a valid, valuable, and wanted human being.

That is what he is.

Norah said...

"It is obvious that not even those exposed daily to autism understand it. There is no mention what-so-ever of IQ in the DSMIV for autism diagnosis. My son has been tested and given a score below 70. I have yet to find an IQ test that is not skewed against autism. They inevitably require social skills that most autistic people lack." (and I would add, not just social skills.)

And that is one of the reasons why 'low functioning' goes inside ''.
It is not in the DSM, and there is no set definiton for it. People often invoke the term (or adjust the requirements for it) to prove their own point, or to shut others up. There are many reasons why I don't think the high and low functioning labels are a good way of trying to differentiate between autistics. Other (autistic) people have already blogged about that many, many times. It's easy to find posts on it if you browse around the author list of the Autism Hub.

Jim said...

Reading this reminds me of many parents of deaf children. There are some who wants to "fix" deafness and there are others who wants to make the best for the child dispite the circumstances.

The same situation with parents of autism children. They are divided and disagree on certain issues.

My wife has a daughter with severed cerbral palsy and mild mentally challenged. We love who she is while at the same time, get frustated with her disabilities. We will never change the way she is unless there was a miracle. We accepted who she is as she is. We love her as she is regardless.

Parents of deaf children wants to their kids who can hear so they can "love them more". What's wrong with loving them as they are even "if" they can't be fixed?

Thank you for sharing this.

Jim

Julie at Virtual Voyage said...

Despite a wide involvement with people over the years, I have only recently come into contact with families with children with some degree of autism.

I feel that what you are doing in creating this blog and airing difficult issues is a great way to raise understanding of some of the complexities involved.

Jim said...

I want to say that we all can learn from this post. Its one of the biggest issues that disabled children face everyday with their parents. I thank you for posting this and you have brought up an important issue that I have been dealing with as a child myself that my parents did their best for me as how they "think" they could. Life itself will never be perfect but we can make life easier for our disabled children simply because we love them.

Sense of humor always have helped me and I agree sometimes, some comics can cause problems but at the same time, as a way of venting that comes with sense of humor.

Jim

mayfly said...

It is true there is mention of IQ in the DSM-IV, but the DSM-IV does not define low-functioning autism. It it is a term to define the comorbid condition of autism and mental retardation.

Low-functioning is not a measure of the severity of the autism, as was said, it is not a criterion for autism.

Yes, I too can believe tests are skewed against autistics. How does one know, if a person is unskilled or uncooperative, ignorant or apathetic? Yet we do see differences in these tests. High-functioning and Asperger's children score with their NT peers in non-verbal IQ, but may score as low as a low-functioning child on verbal IQ. Low-functioning and high-functioning children are so alike and yet so different.

My child is much less autistic than she once was. Perhaps it's the risperdal. She lives a happy life. She still find's joy in piggy-back rides, "the wheels on the bus", where she moves my hands instead of independently moving hers, and she finds "Winkin, Blinkin, and Nod" hilarious despite the thousand or so times she heard it before. She is very happy child. She doesn't suffer at all from low self-esteem.

Once a child notices is concerned about their own future, they have made a major leap. I see acceptance by society a two-way street. Autistics need to do their best to adapt to society's norms, society needs to accept those who cannot.

We need to press for acceptance. We also need to research ways to mitigate the condition. I think we may get to a point where we can stop some autism in utero, and I'm not talking about killing the fetus.

I don't see how autism has benefitted my daughter in any way, but I'd love to her some suggestions.

I am very lucky that she is so happy a child, but I don't attribute that to her autism I attribute that to a loving family.

Maddy said...

Well thank you for that. I'd never heard of it before.

I think on the whole we have to agree to differ [not you and me] but the two very distinct camps. I think as long as we can remain respectful and continue the dialogue then hopefully we'll keep moving along.
Best wishes

vivavavoom said...

I think you bith bring up good points, and I am impressed she wrote you back such a full note. I do agree with her wholeheartedly that just as lucky as you are to have C, he is very lucky to have such a parent like you!!

Suzy said...

I agree with Maddy.
The mom of my friend Jason who is a 46 year old autistic with Aspergers, often talks about the two different "camps" re: autism.

Kudos to you Casdok for initiating the dialogue.

Love to you and C.

Suzy

Flea said...

Aside from any issue of autism,I'll say that I read Clear Blue Water for quite awhile but stopped because it is negative in general. Life is difficult regardless of who you are and what your issues are, and granted, some have more difficult lives than others. I read the comics to bring a smile to my face. This strip did not do that.

I understand that people cope with their hardships in different ways. Casdok, I love that you are so positive and affirming of your son and others. You bring a smile to my face. Thank you.

mommy~dearest said...

I'd have to agree with the "agree to disagree" because we're all entitled to our own outlooks based on our personal experiences.

The part that did bother me though, was how she described her son's lack of quality of life.

I've worked with severe disabilities practically my whole life. One of the most important things I've learned is that quality of life is what you make it. There are those who (for lack of a better phrase) "give up" on their loved ones, and there are those who play the best hand they're dealt.

Personally, I could never "fold" on my son.

MotherPie said...

This is a significant post in that it captures our struggle with life issues. Do we accept things as they are, or do we think about the "what ifs" that are normal human nature?

Wrenching, these things are... and you cover it so well.

Ashley's Mom said...

My children, even those with the most significant disabilitie, are perfect in my eyes. I choose to relish every moment I have with them, and not to spend too many moments trying to 'fix' or 'cure' them.

I disagree with the comic strip creator, and for my own peace of mind, would have to stop reading her strip.

Just my 2 cents...

Chris H said...

My "Point of view" on this discussion? Everyone is entitled to his/her own opinion and we all must respect that.

Kahless said...

Agree to disagree I guess. i am pleased she took the time to write to you.

mumkeepingsane said...

I don't have the brainpower to post a coherant comment tonight. But I did want to let you know that I enjoyed your post. Not quite sure how I feel about the comic strip yet.

B.T.Bear (esq.) said...

Well I am a Bear ov grayte hewmer, as yu kno, but I dident larf at this, I dident think the cartoon waz funny at all.

Az fer wether to wish he waz better or not, all I can comment on iz wat I see arownd me, an I don't kno enywun wiv autism.

But my Mummy haz Bi-Polar disorder, an sumtimes she suffers very badly, an all I can do is hug her hed. But other times it is like she is werkin on the bestest batterys in the werld, so it issent all bad. There is good AND bad.

But wenever I arsk her, Mummy sez that NO, she wuddent want to be 'cured' or 'normal' cos altho the depreshun part ov it is very bad, the up side is good, an also, wen she is in between, she sez she can see she haz sum gifts that she wuddent hav if she dident hav this condishun.

So, I kno they ar not the sayme thing or eevn alike in eny way, but the principle is this- wud she like to be cured? No, she wuddent, cos she sez it is all part ov hoo she is.

The ownly thing she sez is that it mite be eesier for thoze arownd her if it went away. But we awl luv her, an thoze that don't understand don't stay long. An that's their loss. So it's all ok in the end.

Nose hugs,

Bob TB

:@}

Nicki Mann said...

That is cool that you wrote to her and that she wrote back! I think it is just the word "fine" that irritates me a little too. What exactly is "fine" anyway? Perfection?

Christy said...

I have to agree with Karen's sentiment about wishing she could have her son healed and living a higher quality of life.

I don't like the comic strip, I think it was poorly written and could very easily be seen as insulting. So I can see where offense could be taken.

My son has an immune deficiency. He gets sick all the time and suffers from it. He is a compassionate little boy. He is my heart walking around outside my body. If ever I could heal him I would. I love him 110% just the way he is, but as his Mom, I am his protector and there is nothing I wouldn't do to help him live a happier and healthier life.

kyra said...

my first time here--i'm so glad i came by!

thanks for the link. i didn't know about the strip.

Palm Springs Savant said...

two points of view that each have a valid perspective. I applaud you for yours Shrek!

qw88nb88 said...

What, the comic author is under the impression that none of those "high-functioning Asperger's" people ever bang their heads? That those "low-functioning" autistic people who have problems with self-care or speech are unintelligent? That is a rather limited and skewed perspective.

such a comic only perpetuates some limited understanding in the public that reads it. It may be valid as one person's perspective, but that is not to say that it is wholly accurate.

andrea

Marla said...

Hmmmmm....very interesting. I guess I must be missing something because I see nothing funny about that comic strip at all.

Emily, as some know me said...

Obviously, you are both right. Good parents know better than anyone else what is best for their children and for their families. I wouldn't try to tell the parents of a neurotypical child to have wishes or plans or dreams for their child that are equivalent to mine for my neurotypical child (if I had one), and I don't expect anyone to agree with me completely in the decisions I make about my children (except my husband, of course). We are all parents here, and that puts us all on the same side: Wanting what is best for our children. We all diverge when we make our decisions about what exactly "best" is, and that is the very essence of diversity.

E

Susan said...

This is such a hard one. My son is still very young, and is more on the mild to moderate end of things, and I love him with all my heart. But I also realize that I can't put myself in someone else's shoes. So while I cherish my son's differences, I also feel sorrow for people who are more constantly challenged by their children's autism. It's relative, and so personal. I respect you for stating your position with such compassion for the other points of view. Thank you for this post.

Tanya Brown said...

I can relate to both viewpoints. I think the bottom line for most parents is that we want our children to have good lives.

No matter how much we treasure them for who they are, when it becomes clear that a child will probably outlive us and will probably never live independently, the situation becomes worrisome. How can we provide for the child after he's gone and ensure that he's treated with kindness?

Of course, I guess one could always do like this man and invest one's Nobel Prize money in a congenial group home for one's child. Unfortunately, that isn't an option for most people.

Anyhow, life is. Complicated, full of love, vexing.

TheBirdman33 said...

It is impressive that she was so interested in writing you back and "discussing" it with you, and explaining her point of view. I can see both of your points, for sure. I don't have kids at all, so I don't have the first clue what "camp" I would fall in if I were in those circumstances.

Eileen said...

I don't think the comic strip is funny. Although, it is the first time I have ever heard of it. I don't get it. It just does not make sense to me.

As for wishing that autisic children could be "fixed," I wish what could be "fixed" is societies unaccepting view, and treatment of people who are different and don't fit the "norm." My daughter is wonderful, creative, funny, smart, but has a tough time socially. This would be so much better, if people took the extra time to get to know her, instead of judging. Compassion, repect, tolerance, acceptance they are more than just words.
XOXOX

Kelley said...

I am in both camps.

I love my Boo with every fibre of my being. He is my everything. My world.

But in all honesty, even with the amazing things he has brought into my life, if there that mystical Autism pill was available...... well ....

Ask me another day. Today Boo has pulled out an adult tooth, covered with walls with shit and spent the last few hours screaming at ear splitting volume. And made me laugh so hard at weird comments I needed HIS nappy.

Club 166 said...

Thanks for putting this out there. Both your post as well as the responses are food for thought.

Joe

PI said...

I'm sure both of you are wonderful mothers and both sons are lucky to have such loving carers. All I would say, and maybe I don't have the right to say it, is, with the distress the head banging must cause you, would not a perfect world be with him autistic, but not harming himself? I just don't know and please forgive me if I am talking out of turn.

Phil Plasma said...

While not sharing your point of view, it was very nice of her to be so clear and to provide such a prompt reply. My guess is that you may not want to read the comic any longer.

Elise said...

Its very sad to wish your children were different. I can see both sides of the arguement. I understand that parents love their kids no matter what problems come along. I also understand that parents ould take away their child's problems if they could. I honestly don't know how I'd be if I had an autistic child. I admire people on both sides for dealing with their situation with strength. xx

Jen said...

pi- I don't think that you're talking out of turn...I think that it's a very fine line that a lot of parents walk, and you can tell by the comments that there aren't any clear right or wrong answers. I do know that most of the people that I know who struggle with this question always place their children's welfare above everything else, as is obvious from the replies here.

And thanks again to Casdok for providing a civil place for this discussion- on too many other boards and blogs this discussion turns into name-calling, and I think that it's a tribute to the atmosphere that she creates here that the discussion remains so civil.

Real Live Lesbian said...

Thanks for making me think! I'm amazed at how the blogosphere educates me!

titration said...

I didn't even know of this comic strip. Thanks for pointing it out. And I wondered while reading this how hard it is to dialogue around and across these two difference views.

david mcmahon said...

Good on you for contacting Karen - and I admire the fact thath she replied promptly.

I'd never heard of the comic strip.

deb said...

I agree with both of you. As for my girl, I don't know. There's not much point in wishing really, she is who she is. She enjoys her life, far more than I do at times. Katie vibrates with anticipation. How many people are like that?

I agree with Karen wholeheartedly though on the last line she wrote. You son is lucky to have to you.

Billy said...

Well, who is to say what a "perfect world" is? I followed Karen's logic (and respect it), but in the end, I came back to what you said at the beginning of your post. Your eyes see a child just the way he should be. That sounds like a perfect world to me.

whimsicalnbrainpan said...

You both make very valid points. I have to be honest and say that I agree with both of them. Granted I do not have a child with Autism though. I find it so very ironic that there are so many rifts among the many "disability" communities out there.

Mary P Jones (MPJ) said...

I hadn't heard of that comic strip before reading your posts about it. Thanks, Casdok. I think you wrote a wonderful letter to her, and I'm also impressed that she took the time to reply politely. I think agreeing to disagree is the best we can all do sometimes.

Joy said...

Like so many others, I can see both points of view. It's nice for everyone to be able to express their views without being chastised for it. Kudos to you both for being civil adults over the situation, and for you to have shared your thoughts with her.

Cathy said...

I've come late to this, but what an interesting and civilised discussion. In some ways I can see both points of view. We love and accept our son and do all we can for him, yet at the same time I do worry about his vulnerability, about what will happen when we are no longer able to advocate for him. But I don't think a comic strip is the right way to express such fears or feelings.

Mrs. Fox said...

I can see both sides and I sympathize with both. Everyone experiences life's hardships differently and that is what is so beautiful about humanity, as many commonalities as we share each of us sees them through our own unique lens. More than anything when I read the comic strip I sensed a mother who was struggling to cope with very difficult emotions. Even if the words offended, it would be wrong to deny her the comfort of a means of working through those emotions, sharing *her* experience. By doing so she has caused others to look at their own experience with fresh eyes . . . even if they come to different conclusions.

Karen said...

I am the creator of the comic strip Clear Blue Water. I was referred here by someone, and I'm glad I was. What an interesting discussion. This is the first discussion I've come across about this that has stayed civilized and that's both remarkable and refreshing.

Perhaps I wasn't clear in my response, but we do love and accept our son without question just the way he is. We appreciate his quirks, and find joy in his enthusiasm. If I could go back and choose to either have him or not, I'd choose to have him. But I would do things differently. I wouldn't vaccinate him. I would fight for early intervention therapies that I just didn't know about when he was small (we weren't on the internet, and no doctors mentioned them to us.) I would do these things so that he might be higher functioning. I would do these things to give him a better quality of life.

Perhaps I misspoke when I said he wasn't fine and had no quality of life. He is happy. He is loved. I don't want to get into specifics about my son's behavior, and without doing that it's very hard to explain what I mean. Let's just say that he will never experience living on his own. He will never have a job or have friends. He will never fall in love and get married. He will never have children. He will never understand where we went when my husband and I finally die.

He will never know or care that he can't do any of those things, but I want them for him. I want them enough for both of us.

One thing this discussion has brought home to me is that I have a huge repsonsability with my comic strip. These recent strips were written over the Christmas holidays. My son had an extremely horrible Christmas break, and so did the rest of the family. I wrote these out of sadness and desperation. No they weren't supposed to be funny, I just wanted to show other families that they are not alone with their destructive, often difficult children. However, I have realized that the point I want to get across in my strip is one more of hope,than desperation, so I have pulled a strip from running and I am going to spend this week writing more positive strips about autism and about parenting Seth. They will not run until April, but I wanted to let you know that what you have written has resonated with me.

kristina said...

Am very late in joining this discussion.

Karen, My son (he is 10 1/2) has many similar behaviors (which tend to increase on holidays) as the child who head bangs etc. in your comic strip does. I thank you for your humor and wry view of life with many difficulties that recall those of my family.

I don't wish that my be cured or healed of autism as I don't think this is possible; that talking about cure is the most productive way to discuss what our children need. I do think my son was born with autism, and that autism is very much genetic. I have learned ways to understand why my son has had a lot of self-injurious behavior, and how he can taught other ways to express himself and cope.

No one can speak properly about or for anyone's family or anyone, of course-----life with Charlie has taught me that there are other ways of living, other expectations, and that marriage and college and other "expected milestones" need not be the case for everyone, and I have learned that life with Charlie is quite difference than I would have imagined----and good, bumps and all.

Kristina Chew
autismvox.com