I am on a mission to present Autism with a positive approach. No more sad, impossible stories about autism. No more watching children have meltdowns on television for me. That is all that television and newpapers want to show.
Nope, I am on a mission to show a positive side to autism....I know, I know...Autism has its downside....all life does. It is called life.
No one, not even the most "normal" person has it easy. We all have to get along with people who do, or do not, want to get along with us.
I ran into an old friend from school at lunch today. I sat and talked with her and her mother for over an hour (I did not intend to , but I got to rambling)...I noticed a mother walk into the restaurant with her little girl (who has Down's Syndrome).
When they got up to leave, they walked by our table. I said, "What a beautiful child". Her mother looked into my eyes and smiled.
I hope people do not get the impression that I say these things to get a pat on the back...
I say these things because I want people to be aware of their surroundings and that their are differently-abled people everywhere.
Their parent's need to know that we care and we are there to help....
My friend Cynthia said, "Wow, that was amazing how the Mother connected to you"...I told her I have to talk to everyone, but especially parent's with children with disabilities. They need to know that they are not alone and that people see the beauty in their children.
I left there and went to my grocery store. As I was leaving, I heard buzzing..there was my other new friend Andrew (whom I met last week)...I said, "Hi Andrew"...He said, "Hi Jeanette"...my day was made..he remembered me.
If media will not portray our children with all of their beauty and everything that goes with it...not just the gloom and doom...then it is my job to do so.
Get ready America...we are coming...we will be stronger than any Warrior Mom...we have been around longer and we know the drill. We have age and wisdom on our side...we have withstood the good and the bad...we have met challenges and won. We will win the battle of the media also.
Does anyone know Oprah's direct phone number?
35 comments:
Gotta admire moxie like that.
Nobody promised us a rose garden.
If you want roses, start planting!
I agree with treating everyone in a positive upbeat way. Accepting and understanding we have unique things to give. I am very positive about my son. I am confused as why people that advocate for a solution to a safety problem are considered negative. I know that we will have found out that we have caused the epidemic of Autism and find a solution by 2030. Sign me up for the smiles and faith but will your tolerance extend to a Dad that wants to know why we have an infant mortality rate of 34 out of 36 in the first world nations and give almost triple the number of vaccines? I am smiling when I say it because the solution is coming.
http://tinyurl.com/d6bbpn
TannersDad,
My tolerance level is exceedingly high. After all, I do have 6 children and 1 husband.
Together, we can all find a solution to a lot of things.
My problem is, I am way past finding out why, I need to fight for the services my child needs as an adult and my adult children to come.
It is disheartening to me to turn on Larry King or Oprah and find just the "cure" side of Autism. Lets show some of the adult side of it too.
No matter what JB Handley says, adults with Autism do exist..there is one in my home.
I love that picture of you and your son...amazing.
Gosh if I knew what it was I'd send it right to you dearie. But you're right we all have to do our part, I'm pretty sick of the deluge too.
Best wishes
Hey Mom26, I just found and started reading your blog this month, and what a breath of fresh air! I am the mom to 2 boys, 11 & 12, with autism. I too understand that there are challenges, but my kids are happy boys, one is lower functioning, the other high functioning. They are fun and charming. My children are a joy, and I am tired of just the challenges being portrayed.
Jill
I too am tired of only negative portrayals..I have so much joy. I think something needs to be done as well..I too have written letters..emails..to various magazines,Oprah, you name it..I want to make a film-actually, I want a lot of people to make a film..short clips of different people/families giving their point of view-a huge youtube(?) thing-no Jenny/cure/vaccines. It's an idea..
What you write is true and what you did to that mum is beautiful!
we can make the world more beautiful by just taking such a step one by one each day!
I really like your blog!
Yay Jeanette! I am on the same mission. I have 2 boys on the spectrum, one diagnosed with ASD and one in the process of being diagnosed with Aspergers. I am so tired of hearing the sad impossible stories! My eldest, who we believe is an Aspie has been asked to be in a gifted classroom next year. So very proud. These are the stories I want to hear. These are the people I would like to hear about!! I know the downside, let's get more positive.
"It's difficult to I know that we will have found out that we have caused the epidemic of Autism and find a solution by 2030. Sign me up for the smiles and faith but will your tolerance extend to a Dad that wants to know why we have an infant mortality rate of 34 out of 36 in the first world nations and give almost triple the number of vaccines?"
Hi Tanner's Dad,
It's difficult to even want to extend tolerance to such ignorance - ignorance about what "epidemic" is, ignorance about disparity of access to healthcare in a first world country, and ignorance about varying causes of childhood mortality under 5 among first world countries.
I don't think this is an issue of positive vs. negative presentation.
Autism is a terrible tragedy for many children and their families. I don't think anyone would deny that.
And then, for some lucky others it isn't.
"Autism has it's downside"..... you think :) ?
Lillian
Janet,
You are welcome..from another Former Ag Major...
Ag Ed SWTSU 1978-1982...
Hi!
I have been reading your blog for a few months but never commented before. I have 2 hf autistic boys. I love your way of looking at autism positively. Our kids have so many good qualities and so many lessons to teach us. They also have so many good traits if only we look for them.
Positive comments are something all parents needs, particularly parents of children with special needs. The children I work with often have strengths that other kids don't have... music or a unique sense of humor or the ability to find joy in the small aspect of life. We need to appreciate these strengths.
From one Aspie who dreams of someday being accept for WHO SHE IS, not what society thinks she should be, good luck! :)
You *go*, girl!
-- with appreciation, from another one of those pesky adults JB Handley falsely claims do not exist... who is also the father of an autistic son and a daughter in the broader phenotype, and who for the last 20 years has been married to their generally patient and loving nonautistic mother.
As the mother of three children on the autism spectrum, I absolutely agree with you. We need to see the positive in our children; it's there in spades. I recognize that many parents' journey with autism has more negatives than positives, but I believe, since my oldest (who is 19 and severely autistic) will not be leaving home to live an independent life, that I have earned the right to say, perception of the situation determines the situation. He is a beautiful young man who will always be a boy, and I would not change him for the world. I would make his journey easier, and to do that I work to give him the tools, social and otherwise, which will help him. But it pisses me off beyond belief, especially with the abundance of families with multiple children with autism, that people out there can view this as something other than a heritable condition. I look at my children and I see my husband and me reflected back, our traits and our quirks mingled in each child in dazzling variety. They are my world and I would not have them diminished by the pseudoscience that attempts to present our children as the damaged victims of big pharma's vaccines.
Keep doing what you're doing! I'll keep advocating for acceptance and positive regard for individuals with autism on my end, and maybe, if enough of us stand up and offer our voices we can drown out the other side. At least we can offer counterpoint.
Gotta agree with the positive spin here.
I think there are more of us that want all the negative slants on autism to stop. All it really does is further alienate our kids from others.
There really are positives to autism if you want to look. Kind of a half-full vs half-empty thing...personally, I prefer half-full.
That is a loving attitude: do nothing about your children's disability and let the society take care of them. Wonderful!
Another expression of parental love: be proud your 19 yo is a beautiful young man and close the eyes in front of his mental retardation.
Right, we don't have a duty to produce offspring that can contribute to the society, do we? It is the society's duty to take care of our children's disability when we don't want to move a finger about it, isn't it?
I prefer a different view of parental love.
I prefer to put my son through ABA and fight his disability so that he'll be able to live on his own and fructify his potential in the stead of living an adult life in the care of others and contributing nothing to society except the opportunity for others to help him.
Marius Filip,
Where did it say, anywhere on any one of my blogs, that I do nothing for my children with Autism?
My husband and I work hard with our children. They are well-behaved and smart. They don't need ABA, they were taught through example and through love. ABA was unproductive for our children, but I am glad it works for yours.
My children already contribute to society, it is a shame you don't see that.
Jeanette
Mom26children,
If your children have a chance to live independently or with a reasonable amount of help as adults based on the intervention that you and your husband did outside the framework of ABA, this is great.
If this knowledge can be brought together in a form of a new therapy, it is equally great. I think you should impart that with other parents.
What I don't subscribe to is presenting the rosy and misleading picture of autism which dismisses the reality that autism is a disorder that we have no reason to be happy about. Yes, our children are beautiful, autism is not.
In the respect of contribution to society, I was speaking strictly in terms of resources. An adult who holds a job and pays taxes is contributing to the resources of a society.
An adult who holds a job, pays taxes and raises children who in turn will hold jobs, pay taxes and will raise other children contributes even more to the resources of the society.
An adult who earns no money, pays no taxes, but his daily bread must be paid for by the society does not contribute to the enrichment of the society's resources, but subtracts from them.
Moreover, an adult who requires supervision of qualified personnel subtracts even more resources from the society.
I am NOT trying to say that the disabled should be killed in order to save money - the society HAS the duty to take care of all its members if they cannot take care of themselves.
However, I do believe that it is unacceptable to rely on the society before you do it on your own. You rely on the society only after all your efforts have been exhausted to fight the good fight.
From this point of view, saying that a disability is simply "a difference" and that the difficulties brought by it are not a big deal because we all have ups and down is to me both immoral and false, because 1) for many people severely disabled by autism, the autism reality is not "ups and downs", it is a hell of frustrations, dis-functionality and isolation 2) it neglects the duty of each citizen to take care of himself/herself before being taken care of by the society and 3) it ignores the entire body of scientific literature that makes a clear difference between normalcy and pathology.
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Marius, you're not taking into consideration the crappy economy. More people who would be holding down steady jobs (ME!) now have to depend on all sorts of services to survive because they can't keep a job longer than a couple of weeks and it's not even their fault.
I imagine a good day of people with autism could hold down jobs if society's attitudes towards autism were different and better. If the first priority was understanding autistic people and helping them find a place in the larger society instead of just dismissing it as a tragic disability.
This awesome manga called With the Light comes to mind. The first volume had a nice line about how autism isn't something to be fought against but something to be understood. So I like the positive approach better.
What's wrong with giving a person what they need to be a contributing member of society anyway? That's not a drain on society at all.
Lyn: I am totally for understanding autism. I am not for a positive attitude towards autism.
I am vigorously for fighting autism with all the capacity we have - doing ABA (or other kind of therapy), recovering from autism, and, some day, finding a cure and eradicate it completely.
Autism is a disability. It is not just a difference. It is a mental illness.
More understanding towards autistic people is necessary, but this doesn't mean autism is not evil. Any disease is evil.
Any disease is to fight against. This does not mean people are evil or we have to fight the diseased people. We have to fight the disease, not the people affected by it.
Lots of autistics were outraged by the comparison between autism and cancer. OK, I am not comparing it with cancer, which is a terminal illness. I am comparing it with schizophrenia, depression, bipolar disorder, agoraphobia or mental retardation.
Shouldn't the people affected by those mental illnesses receive more understanding? I thing they should.
Does it mean we don't have to fight schizophrenia, depression, bipolar disorder or phobias? If a cure for them were available, should we reject it? I don't think so.
Loving and understanding diseased people and fighting the disease producing their suffering are not mutually exclusive.
Regarding the contribution to the society, I think a profoundly delayed person that has a mind of a 6 yo (I know an 18 yo young man like that) or who does nothing else than rocking back and forth cannot contribute to the society's resources - because his daily bread has to be paid for by others.
Which is fine, we DO have to support the weak and the disabled.
But this doesn't mean there is any reason to celebrate autism or have a positive view about it.
Marius,
You just called our children evil. You said mental retardation is evil. I'm all for freedom of speech, but if this is the tenor of your posts, if it were my blog you were commenting on I'd have to label you evil and consider strongly censoring you. You have a child on the spectrum? This is how you view your child? I have a brother with schizophrenia; he isn't evil, and the disorder isn't either. Neurological disorders and mental illnesses aren't evil. My three children on the spectrum aren't evil. My grandmother who had bipolar wasn't evil, crazy but not evil. So, individuals who see disease and neurological differences as evil are evil, possibly psychopathic. Certainly devoid of empathy. How about that? Care to tell me why I am wrong?
KWombles: I did not call any person with a mental illness evil.
And, by the way, in my family I had a few folks with schizophrenia and depression and I know quite well the suffering that these mental illnesses bring.
What I did though, is to call the illness evil. I can do that because I know how to make the difference between the illness and the ill person and I NEVER mingle the two.
By the same token, I believe people praising autism (I've heard a guy saying "autism is great") prove that they don't make that difference, but this has nothing to do with me or my intent.
[ By the way, autism is not a "neurological difference".
Extroverts and introverts, or people with a visual memory versus people with auditive memory, or left-handed versus right-handed folks have neurological differences.
Autism is a brain disorder, not "a difference". Or, rather, the "difference" is the difference between normalcy and pathology.
The fact that in some people autism is mild enough to allow them to function does not cancel it's status as a mental illness.
Afterall, people with agoraphobia can function as well, yet they are ill. ]
What I am saying is this: people with (mental) illnesses are to be understood, loved, helped and cured.
Illnesses (of any kind) are to be fought against up to complete extinction, if possible.
And this includes mental illnesses, and this includes schizophrenia, depression and ... autism.
Regarding the censorship of my words, I did nothing else than answering to people addressing me. I've spelled out my position once and I do not intend to repeat it.
On the personal side, it's interesting how in a single post you imply three things about me: that I am evil, that I am possibly a psychopatic and that I have no empathy towards others.
Good job!
Spheksophobia is a perfectly rational fear. Those things STING.
That aside, the problem with that attitude about autism is it's kind of harsh on a person that has autism, it's an attitude all sorts of organizations can take advantage of with "cures" and treatments that are a bit too aggressive and don't take an autistic person's personhood into consideration.
Seems healthier to respect and understand a person's autism instead of looking down on it. It would be especially helpful for people who could get jobs and contribute in an understanding and accommodating environment rather than forcing a person with autism to conform without understanding.
Marius,
You can't separate autism from the child, or schizophrenia or bipolar from the person. They are neurological disorders and we are our neurons. You called those things evil; I, from my vantage point as a college instructor of psychology, stated that this was tantamount to calling our children evil. Your posts here have been, gosh, what's the word? Oh, yes, completely without empathy. Huh. You didn't like my rebuttal to you, that someone would bandy the word evil around in context to you? So, wow, maybe I don't appreciate it in context to our children.
Read clearly, please: Autism is NOT a disease. It is a disorder, but it is not a disease. Diabetes is a disease. Sarcoidosis is a disease.
Looking at the positives that are there in our children with autism, the gifts that they do have, does not mean we do not acknowledge the difficulties that our children face, does not mean we don't do our job as parents to help our children achieve as independent of lives a possible. It doesn't mean we don't fight for treatments that are beneficial. It does mean that we see the entire child, the good, the hard, the sad, the poignant. We don't label their disorder EVIL. You did that.
Oh heck.
Once more into the breach.
Marius: it is a difference: different wiring from the neurotypical, differences from the norm in areas of the brain. Difference meaning not the same.
Don't believe me, please read my paper at http://www.kwombles.com/psycunit2.html
KWombles: I challenge the statement that you cannot separate autism from the child. Or schizophrenia, or the bipolar disorder.
I consider the position as being utterly false - and dehumanizing, because it equates a person with his illness. And I found THIS position rather disturbing, than calling EVIL an illness which profoundly incapacitates a person without any fault from his/her part.
I will tell you why it is wrong this position that you cannot separate autism from the person.
Firstly, you say that we are our neurons. I'd rather say this is questionable, but let's assume it is true.
Autism is a brain disorder, there's no doubt about it. Now, what's the magnitude of the disorder? What do we know about the neural underlying causes of autism? Very little.
It is postulated by the Neurodiversity philosophy that autistics have a different "brain wiring". My question is: how do they know that? Not even the scientists know much about the underlying causes of autism.
What if, in fact, autism is produced by some local disorder in the brain? Or by a chemical imbalance in the brain? Or by mercury poisoning, as some say? In such case, how it is the autistic brain "differently wired"?
The truth is: nobody knows. All we pretty much know is this summary of disturbing behaviors, ranging from almost totally incapacitating a person (the lowest functional autism) to the incapacitation only in some areas like speech or socialization (the HFA/Asperger's).
Beyond these behaviors we know very little, and upholding that autistics are a different kind of people like the left-handed are different from right-handed seems to me empty ideology without any reliance on scientific facts (which are rather scarce, to say the truth).
Now about calling autism (or a disease or illness) as EVIL. English is not my native tongue, so I have to rely on a dictionary.
Look what WordWeb has to say about "evil": "Having or exerting a malignant influence" (among other definitions).
Considering the low functional autistics who have trouble wiping their rear end, I'd say that autism is quite evil, at least for them.
Now about my calling autism a disease. I go back to WordWeb: "An impairment of health or a condition of abnormal functioning".
Autism is a disorder, but, according to the above definition, it is also a disease. Not like diabetes, but it is an impairment of health. Of the mental health.
You talk about finding talents in our children. What has this to do with autism? We must find talents in our children no matter what, whether they are healthy or not, and fight so that they have a better life whether they are healthy or not.
I don't see why do we need a "positive view of autism". Because, in my opinion, there is nothing positive in autism.
Autism is a brain disorder. An impairment (lighter or heavier, depending on person, treatment, etc).
And I will call autism evil, along with all the illnesses that incapacitate people and bare them from reaching their full potential.
And I know very well what I'm talking about. My son for instance: he's capable of solving some problems for a 13 years of age (he's a little over 5). Yet, his speech is at the level of a 3 yo. What's worse is that his UNDERSTANDING of speech is at the level of a 3 yo.
So, I have no doubt that without proper intervention and if he'll not develop appropriate communicative abilities, his cognitive advantage (well beyond his age right now) will vanish in thin air.
And I have all the right to call this profound imbalance, produced by autism in my son, an EVIL thing. Sorry, doing otherwise would mean I don't know the difference between day and night.
I think I made my position quite clear on the issue. I intend not to continue this thread of discussion and this attitude of mine will have no demeaning intent from my part.
Marius,
Taking into account the language barrier you have since English is not your first language and that you would not be aware of the connotations of the words like evil and disease so that your statements might have come off more offensive than your intent, I apologize if I misinterpreted them.
I may have overreacted to your posts and been overly aggressive in suggesting that someone reading your posts might consider you to be evil, psychopathic, or unempathetic.
KWombles: it is OK, I don't think any further about that. I used the word "evil" with the meaning "really bad, truly damaging", that's all.
Speaking of the necessity for a positive view: there is something else that I think it deserves a positive view, and this is *not* autism.
What I think it truly deserves praise, better acknowledgment and better media coverage is the courage and hard work (bordering true heroism) of millions of men and women struggling to better the lives of their children hit by autism.
Also, the work full of abnegation of thousands of researches, therapists and professionals around the world who engage in this battle on a terrible illness, who are real soldiers in the trenches of this war on autism.
And, the last but not the least, the autistics themselves who struggle day by day with the limitations imposed by their condition in the middle of a society that more often than not is insensitive to the weak, the silent or the poor.
Their achievements are living proof that the human spirit can and must be triumphant over the limitations and the weaknesses of our inherently frail physical nature - and THIS, I think, deserves a positive view.
And neither autism, nor other illnesses.
Those we must bear with in dignity and decency. They are CROSSES upon our shoulders - nothing less, nothing more.
Marius,
I think we're approaching a greater understanding of each other as we work through the language barriers. I don't think Jeannette or anyone when wanting the positives acknowledged are implying that all autistic behaviors are positive. From a personal perspective, having a severely disabled child, my oldest, who wasn't potty trained until 9, didn't really speak until 5, who had severe sensory issues and often threw incredibly physical fits when the world was too much for him to take in, that is certainly not positive. But, what is positive and a part of his autistic brain is his incredible gift to compose lovely bittersweet almost dirge-like pieces on the piano. Another positive or at least not negative is his way of viewing the world that is not tied to the emotional connotations. When you see only the literal, it is such a different way to see the world, and I can often learn something new from all three of my children who do not get bogged down in the emotive connotations that language has for neurotypicals.
Another positive is that none of my three children has ever intentionally broken a rule. Rules are rules, after all, and so as long as guidelines are clearly set, I can know that none of my children will wiggle around it. I also know that I can ask a question and 99% of the time, as long the question is understood, I get the truth. If one of them tries to lie, it is so obvious that they stop when I go, "Really?"
So, when I say celebrate the positives I am not diminishing the negatives (normal kids have positives and negatives, too). I am asking for a recognition of the whole child, celebrating the whole child, finding the positives to hold onto as we fight to help our children overcome those behaviors that get in the way of communicating with others.
And for me, autism is a part of who that child is, a reflection of the underlying differences in how her/his brain works, based on the now considerable body of studies which are beginning to show where those differences are.
Thank you for the interesting dialogue and the opportunity to understand your position better and to elaborate on mine.
KWombles: I would like to comment a little on the first part of your text, about the different way of thinking that can one can see with just a little observation in autistics.
I am expressing my thoughts because I am trying these days to understand better my son, I've talked with two extremely intelligent autistics (that kind of people that give no bull and speak openly about their experiences) and I am beginning to draw some conclusions that, while not being ultimate, they deserve to be expressed in this context.
I've read a little about the different way thinking of the autistics. They don't get verbal language or linear information. They think in pictures, smells and sensations. They are detail oriented. They see what neurotypicals don't see, and so on and so forth (see also the "In My Language" video of Amanda Baggs).
And I was able to feel in those sources a certain sense that these differences are something not to bother about too much, that they are just differences with an inherently good value in them.
Although I am not a specialist in neurology, psychiatry or cognitive sciences, there is a big question mark to me about this point of view.
Because I am believing more and more that the "visual" and "sensorial" way of thinking is actually the expression of a difficulty to conceptualize - which is one of the attributes of intelligence, at least how we understand it in humans.
That is, because autistics have difficulty to construct abstractions, use parables, maneuver a certain kind of associations (I know for sure that the Asperger's have such kind of difficulties) , what's left to the autistic brain is to "feel" the world in the stead of "understanding" the world - where "understanding" is seen as a composition of abstractions.
So, from this perspective, the "visual" thinking is not simply "a difference" but the result of a profound and very grave mental impairment, that of having difficulties with constructing concepts - which is worse that simply not being able to speak.
And I dare to say that autistics lack an ability which is so profoundly human that, in my opinion, made the human race succeed. Neither the smell, nor the speed, nor the power of our muscles made us conquer the planet.
It was our ability to process information in a highly elaborate and intricate manner, to extract the essential from non-essentials and to assign to brute information those meanings with generalizing power that allowed us to construct civilizations and succeed as a species.
While the autistic specifics that seem "just differences" can and should have a useful role in society - and the society certainly can make more room for such specifics to be useful - I dare to say that, in themselves, they are not "just differences". They are impairments (therefore, bad, in essence) - not in the same manner but perhaps more grave than the potty training at age of 9 that you spoke about.
To illustrate better my sayings, I give two examples and I invite people reading us to take a look at:
1) the blog of Stephanie Lynn Keil. She's describing the experiences from when she was younger, institutionalized, "thinking in pictures" and so forth. I like her very much not only because she's a very special person, but also because she's void of any ideologization of her condition.
2) the case of Kim Peek. He did not have autism, that's true, but he manifested the same incapacity to conceptualize. He does not "think in pictures" like the autistics do, but he is thinking literally like them. Also, he's got an unusual ability to memorize a very large quantity of information without being able to extract a higher meaning from it - I'd say this is the equivalent of "attention to detail" found in autistics.
As I said, these are not final conclusions. I embarked in a jurney that's just begun. Yet, I will do that for sure because my son is growing and I have to understand his condition better in order to ensure a future as bright as possible to him.
With these final thoughts, I thank you for this discussion, too. And to our host here as well.
Marius,
I wish you well in your journey. I've been on this journey with autism for nearly 20 years now, and how I have felt about it has changed over the years, so where I am reflects that half my life has been spent parenting children with autism and my knowledge gained in pursuing my master's in psychology, focusing in part on autism. I know that my understanding of autism will grow and change until the day I leave this world, as will yours, and all of us who have the fortune to learn patience and compassion and sometimes even wonder from caring for these exceptional individuals.
:-) It may be that their role in society, their contribution, was always intended to lead us towards compassionate care, to be our hearts, our moral compass.
I am totally with you all the way in everything you say. I am a 26 female from the uk and I have two autistic sons aged 3 and 4 and I wouldn't change them for the world.They are my only children and im a single parent, and it is like a breath of fresh air reading your website
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