As parents of children with autism spectrum disorders we all have to learn how to come to grips with the realities of our children's autism disorders. Some do the best they can to raise their child to the best of their ability to prepare the child to live the fullest life possible. Some become fierce advocates for services, treatments, research and cures for their child and others with autism disorders. I respect most parent's approaches. One approach that I do not respect, and have never pretended to respect, is to look at my son's autism disorder as a blessing.
I have on several occasions criticized, even ridiculed, Estee Klar, author of the Joy of Autism blog, for promoting autism as a joy or blessing. Yesterday Easter Seals, an organization active in autism advocacy, re-published the views of Barbara Gaither, mother of an autistic child who, like Ms Klar, views her child's autism disorder as a blessing for which she is thankful:
"As the years passed since that initial diagnosis in 2002, I’ve grown more and more thankful for him and his diagnosis. Many would think that I’m crazy — and maybe I am a bit, but he is such a tremendous joy to me and our entire family. He has taught me not to take the little things in life for granted — and by watching him grow and learn, I have learned so very much.
It’s simply amazing. Sometimes, I wonder what life without him would be like, or even life without him being autistic and I cannot imagine it. At this point I don’t even want to. I wouldn’t change a thing about him even if I could."
Ms Gaither is entitled to her own views. Easter Seals, in a democracy, is also entitled to promote her views. Personally I find repugnant the idea of taking joy in, or giving thanks for the fact that my son has a disorder. I can not accept the idea of being thankful that your own child lacks all the abilities to function in the real world, to live a full and complete life as possible, just because it makes a parent feel better to think that way.
I love my son Conor dearly. I regularly feature picture sets of him with he and I enjoying the outdoors and the natural beauty of the city of Fredericton. I love being with him every chance I get and I can not begin to describe how much fun it is to hang out with him or what a great sense of humor he has.
Conor has an Autistic Disorder diagnosis, assessed with profound developmental delays. He has, particularly in the past bitten himself. He has punched holes in glass windows and cut his hands. I can not give thanks for a disorder which results in injury to my son.
At 13 it is clear he will never live an independent life. I have, as an active autism advocate here in New Brunswick, Canada visited institutions where some autistic adults have lived. While I respect the people in those institutions for doing the best they can for the autistic adults in their care it is not a future that I wish for my son. It is not a future, for my son, that I would celebrate as a blessing for which I should be thankful.
I want to see Conor live the fullest, happiest life possible. I want him to have the opportunity of treatment for his autism disorder. If the "it's gotta be genetic" approach to autism research ever truly loses its sway and cures are sought and found I would want Conor to receive real blessings ... treatments or cures which help him live a fuller life when I am gone.
I do not lose sight of the fact that Conor's autism is a ... disorder. One that will continue to restrict his life long after I can care for him, long after I have finished my tour of this planet.
Love my son and be thankful for every minute I am with him? Absolutely.
Give thanks that my son has a serious autism disorder? Never.
autism
Thankful?? Thankful that in the end there will only be one not 2 children I have to find longterm care for... YES!!!! I am.
ReplyDeleteThankful that my youngest has Autistic Disorder (redx'd July 2009), NOT A CHANCE.
Love him... oh yes, he's adorable. Happy, fun, loves his Mommy most of all.... But to know he's 8 today and falling behind his peers daily... Makes me cry not laugh.
I'm proud of him, I'm proud he's starting to talk more wanting to share things in his world.. it's truly tiny compared to NT children but... it's huge for us. I'm proud of the fact we can go anywhere and he's interested and fun - when he doesn't bolt. I'm proud of his academics and his learning...
But to think it's "OK" that he's more 4 to 5yrs of age than 8... plus technically non-verbal... Not thankful at all.
Doesn't mean I don't love him. Doesn't mean I blame him. Doesn't mean I won't do my best for him... But it does break my heart knowing he'll never do the things his older bro will....
Harold, do the people you quote truly say that autism is a blessing, or do they say that their children are a blessing for who they are? I, for one, don't respect anyone who says that autism is some kind of blessing, and I cringe whenever I see stuff like "he's taught me so much" in this knd of thing. As if disabled people are put into the world to "teach a lesson"!
ReplyDeleteOn the other hand, if the people you cite say that their children should be valued and accepted as they are, I have no problemw ith that. I don't know whether these children engage in self-injurious or aggressive behaviors, but I for one do and did more in the past, and while I want to be valued and accepted as a person and would not want to have a cure that would turn me into whatever the standard fo normalcy is, I would want treatments for my severe overload/meltdowns. If a drug or treatment were ever developed that is actually effective for me with manageable side effects, I would take it. (I know risperdal is currently approved for this, but it doesn't work for many people, including me.) On the other hand, that is not the same as wanting to be turned into altogeether NT by some pill. And just FYI, I also don't wan tmy harmful behavior punished out of me and then considered "cured", because the overload, lack of communicative skills, etc. would still be there.
I have never said autism is a joy or blessing, and I don't see why anyone else would say that, but I can see why some say their child is a blessing or a joy.
As a side note on the institutions, just face it: your child will be an adult and you'll be dead or incapacitated long before a cure is found. Why don't you advocate for better care for once your son is an adult?
GREAT post! I feel the same way about my disabled daughter. I love her more than anything, and want the best for her, and she blesses my life for being in it.
ReplyDeleteBut, I totally agree with you, that I would never wish this upon her, I knew her before she was disabled too, and I mourn for the life she has lost, the potential she had.
Now, all I can do is try and provide what I can to make her day better, and currently am in a court battle with a psych hospital wanting to lock her up in a state institution.
She has a dx of PDD and psychosis, all they focus on is medications, and the institution is a very dangerous setting for anyone to be sent to.
Thanks for speaking out.
I could not agree with you more. Autism is not a blessing and I am not thankful for it. My son "is not" autism. And I am not thankful that my son would have such a disorder. I do not feel blessed that this happened to him and never will.
ReplyDeleteI am thankful for my son. I love him more than anything in the world. He is my joy, my happines - he is truly the love of my life. He makes me proud every single day.
Astrid yes they do say exactly that. That is why I posted the comment that I did.
ReplyDeleteIf you click on the link I provided to the Easter Seals story you will the mother's complete comments including this:
"one of the most amazing blessings is having an autistic son."
If you read the paragraphs in italics from my comment you would note the following:
"I’ve grown more and more thankful for him AND HIS DIAGNOSIS."
"I wonder what life without him would be like, or even life without him being autistic and I cannot imagine it. At this point I don’t even want to. I wouldn’t change a thing about him even if I could."
Ms Gaithner is clearly saying that she is thankful for her son's autism. There is no other possible interpretation of her remarks.
As for Ms Klar she has hundreds of posts on this subject but you can start with the title of her old blog - The Joy of Autism. It was not called the Joy of Her Son it was the Joy of Autism. And it was clear in her posts.
I find great joy in my son but not the fact that he is severely autistic and that he is severely disabled as a result.
I would not trade my 3 year old son for all the money in the world, he is a blessing to me, has given me great joy and pleasure. He is slightly injured, just on the cusp of being diagnosed with autism. But to me, saying that his injury is a "blessing" is like saying that it's a blessing so many children are injured in car crashes because cars are being made safer because of it. WTF am I saying? No wait, it's not like that at all. It's not like someone is making the vaccines safer, no, no one is making anything safer, go ahead, have 8 or 9 vaccines in one day, sure they're safe, oops, got a little brain injury, a little developmental delay there? Oh well, it's a blessing. Praise Jesus, my son stopped talking, oh boy check it out, poop smeared on the walls, hallelujah he's banging his head on the floor! What joy he just ran off and fell into the neighbors pool.
ReplyDeleteThere are people in this world that pay to have others beat them, piss on them, whip them, maybe they can explain why autism is a blessing. I sure as hell can't.
Oh yes, the "autism is a gift" or "it's a blessing" garbage.
ReplyDeleteOh joy! Three to four hours of sleep every night for years on end and an exhausted child and mother who could barely function because of it!
What a gift! A one-month-old infant with a skull fracture in the hospital thanks to his autistic sister climbing into the crib and tossing him out, followed by social services at my door afterwards threatening to tear ALL my babies from my arms over the incident. Praise God!
These people who tell me to "celebrate the gift of autism" or act like I am a piece of crap for a mom for wanting a cure can go suck it. Why the HELL should I EVER rejoice over a condition so horrible that it landed my helpless infant in the hospital?
I think if I were to respond in any other fashion it would make me weird.
I definitely think Estee Klar takes this "Joy of Autism" thing too far. Yes, I am in favor of accepting people as they are, as opposed to how we wish they were. I even accept that parents wouldn't want to change their children, but that's because I make a distinction.
ReplyDeleteIt's one thing to wish certain things were different but that overall, you don't feel the NEED to change your child. That's acceptable by me. But to actually want your child to be disabled? To prevent them from not being disabled or being less disabled? That goes too far.
If you say that there are positive aspects to the situation you child is in, I think that's okay. If, however, you say that the situation itself is positive is bogus.
To play the hand you were dealt is admirable. Wanting to rig the deck is something totally different.
Just for the record I am thankful, not for my problems, but for the opportunities to make something of those problems and the strength and resourcefulness to seek them out.
thankful? of course not! autism flat out sucks! but.... he has taught me alot and i am a better person and probably a better husband to my wife and better daddy to him than i may have been if he had been typical. do i worry everyday what will become of him when we are to old to care for him? i sure do. there is nothing at all good about autism but without it my wife and i would not have met some of the people we have and been able to have an impact on their lives to help them get through tough times with their children. autism sucks, but it is what Gage has and not who he is. he has made me aware of my patience, understanding and even love for others and maybe that is why God places special children in our lives to do these things. of course we have no idea why but God makes no mistakes and all we can do is place faith in Him that our children will be cared for as adults and everything will fine after we are too old to care for them.in Heaven there will be no autism along with the other disorders and diseases we have here on earth. that is something we can put our faith in when the time comes to pass. there is nothing fun about sleepless nights, changing pull ups at age 10, feeding,ot, speech and physical therapy visits along with being broke from doing all those things. the blessings come in ways of the first word, the first time they use the toilet or maybe the first word they read. all of those things come late to us verses parents that have typical children but those things along with the fact we have the ability to get the therapies our children need to improve are our blessings. we love Gage more than anything and are we "blessed" because of his autism? no, we are blessed because he is our baby and he makes us proud of his accomplishments no matter how small and how he affects us in ways he will never know.......
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