Proust says, “The real voyage of discovery is not in seeing new lands, but in seeing with new eyes.”
Can I love Aaron and hate autism?
If I say, “I love my child, but hate cancer or heart disease…” many people would say that is okay.
If I say, “I love my son, Aaron. I hate autism.” some people say that is NOT okay.
So, call me a villain, ignorant, hypocrite, politically incorrect, or whatever–but I refuse to celebrate autism–I refuse to give autism that power.
I gladly celebrate the diversity of individuals. This diversity makes our world stronger and a more interesting place to live.
I love individuals who have autism, just the way they are.
But–I will not celebrate autism like it is a good thing.
World Autism Awareness Day April 2
The United Nations designated April 2 as World Autism Awareness Day. April 2nd next year is already designated too.
Are you going to wear blue? Will blue lights in the Empire State Building, or on the Jesus statue in Rio, or the top of a pyramid in Egypt really mean anything?
Is this like a birthday party? Something we celebrate every year? Send up the blue balloons? Paint your face blue?
I found some of the World Awareness Day press curious: “In fact, a world without Autism would be a lesser world.” New Zealand: United Nations declare a day to celebrate autism
I think wearing black would send a better message. Autism Awareness should send a plea for action NOW. We need help and resources NOW.
So, the United Nations has established April 2 as World Autism Awareness Day. Great! Let’s talk about autism.
What causes Autism?
Well, no one knows for sure. The “experts” have narrowed the cause down to environmental, biological, sensory, abuse and neglect, genetic, chemical, neurological, food…and the ever popular–it’s the parent’s fault.
So the short answer is, who knows?
Yesterday someone told me our children have autism because they don’t get enough eggs. Just add that to the list. They might be right.
I recently read a study (2013) that blames the grandparents. They conceived the parents late in life.
Don’t you love scientists–probably funded with the autism awareness fundraising, eh?
Dr. Anne Donnellan spent her career working with families and people with autism. She often says, “The more theories, the more proof that we don’t know.” She also gives her version of circular logic in Disability World.
Circular Logic
Parent: My child keeps flapping their hands.
Doctor: Ah, that is because your child has autism.
Parent: How do you know?
Doctor: Because your child flaps their hands.
Is Autism the Greatest Gift?
Some advocates want you to think autism is the greatest thing ever. They talk about the special abilities of people on the autism spectrum and say it is only because of autism they have these talents.
Hummmm. Is that so?
Sure Temple Grandin, with a glance, can tell how many nails are needed to build a livestock yard–but is that only possible because of her autism?
Rainman could count the number of toothpicks on the floor. Is it possible there is someone else in the history of the world that could also do that?
Are we again caught in circular logic?
Parent: My child can count the number of nails or toothpicks.
Doctor: Ah, that is because your child has autism.
Parent: How do you know?
Doctor: Because your child can count the number of nails or toothpicks.
There are some people with the label of autism who can tell you the day of the week for every calendar year in recorded time.
I can’t. Probably you can’t. But, is it possible there is at least one other human being without the label of autism who can?
The Guinness Record books are full of typical folks who can do all sorts of incredible tasks.
Hurry, quick. Do we now need to give those persons the label of autism?
There are some who are going back to past genius’ and claiming they must have been autistic…Mozart must have had autism. Disney perserverated on those mouse pictures–he must have had autism…
Couldn’t Temple Grandin and Donna Williams just be talented people? Isn’t it demeaning to say, “No, the individual Temple Grandin has nothing to do with it, it is only because she has autism?”
Is it possible the statistical increase in the number of people with autism is partly due to our current scientific paradigm of labeling and sorting people? And some people promoting “autistic envy”? The new figures are 1-50. One child in every fifty–and all we are doing is having Autism Awareness Day at the Philadelphia Zoo?
What is normal?
Well, turns out we don’t really know that either. Plus, we could say “normal” changes every year in every culture.
Sure we have tests, but anyone who studies IQ or other quantitative or quantitative measures will point out the flaws.
Multiple Intelligences| Howard Gardner
Howard Gardner studied people with autism who were labeled as autistic savants (actually “idiot savants” was the term used at the time). He was able to identify at least eight different kinds of “gifts or intelligence.” Now, in every school in the world (that uses best practice) his theory of multiple intelligences helps all children learn. Gardner says each of us has all these eight intelligences, some are just more developed than others.
This is one of the side benefits of autism. Without the diagnosis of autism, the scientific community might have had a harder time making this discovery. Science needs large groups.
Could it be we all have gifts and traits of genius, gifts, and traits that could be labeled as autistic? Are we all a little autistic? Are none of us “autistic” in the pure definition of wanting to be apart?
Stinkin’ Thinkin’
So, what’s the deal with autism? Can’t we just celebrate individual diversity?
If we really believe autism is a tremendous gift, then it would be logical for each parent to wish their child would have autism. Right?
I once went to a conference for people with Down syndrome. Everyone kept talking about how people with Down syndrome were the happiest people in the world–how glad they were to have their child in their family. They used examples like, “They will always believe in Santa.” “They are pleased when I fix them chocolate milk.”…
Using circular logic:
Parent: I want my child to be happy.
Doctor: Children with Down syndrome are happy.
Parent: Then I want my child to have Down syndrome.
So, if we want our children to be happy maybe we should try to figure out how to add an extra chromosome to every baby’s DNA.
If autism makes us gifted, maybe we should be researching how to make 100% of the population have autism–add autism magic to our babies’ lives.
This kind of thinking is just nuts, yet it is common in each area of disability. Stick around Disability World and you will hear people yearn to have the courage of people with cystic fibrosis and muscular dystrophy, and be sexy like people with cerebral palsy…
Okay, I understand some advocates are probably hyperventilating at this point. How dare I talk this way about people with autism and Down syndrome?
The person who gets joy in Santa, or in having chocolate milk is an individual. Each individual person–even if they have a label– is different.
We can love the individual–not the disability.
As family members, friends, and as self-advocates, we can value the individual person’s talents, gifts, joys, and sorrows. We can see them in the context of their environments–but, we don’t have to give all the power and credit to the label of disability. The individual should get the power and credit. They are the ones who are who they are.
I can love my Aaron–I don’t have to love autism.
I can see Aaron’s gifts and talents–I don’t have to think they are only because he has the label of autism.
Aaron is a loving person who makes kissing noises as I turn out the light. He smiles when I pull on the toes of his socks. He gives me hugs when I walk past him. He is patient as I try to figure out what he wants. He concentrates on his books and loves pictures. He gets excited when I come in a room. I love when he relaxes in his bath. I love when he initiates a song or goes to the bathroom. I love when he figures out how to eat the cheese off my sandwich…
Aaron is unique. He adds his own version of diversity to the human family. He is a great son, brother, uncle, and friend… just the way he is.
Autism sucks. Aaron doesn’t.
Autism affects each person differently.
In Aaron’s case, Autism means he can’t talk with words. It means he is 38 years old and can’t always tell when he needs to go to the bathroom. It means he has trouble making friends. It means he yells in public restaurants. It means he chews on his clothes and books and the car seats. It means he has motor difficulties and trouble walking–crossing from the rug to a tile floor. It means he is always afraid of falling and losing his balance. It means he bites his hand to calm himself. It means it takes him a long time to learn things. It means he will forget them if he doesn’t practice them every day. It means he likes music, but not loud noises. It means he likes to be moving (in cars, buses, boats, and planes…) It means he likes to swim, but not bend over. It means he can’t tie his shoes or dress independently…it means he cannot be left unsupervised even for a minute.
That all sucks.
I wish it was easier for him. I wish it were easier for me to help him.
But all those difficulties don’t mean I don’t love Aaron with every fiber of my being.
Each day for the last 38 years, I work to get Aaron the support he needs to live, work and recreate in his community. To allow him to be the best person he can be–For him to be able to make choices and have the opportunities he wants.
There is a difference.
Dream Plans for Aaron Ulrich
I am adding our dream plan for Aaron. You can click on each of them and see I am NOT trying to cure Aaron. I am NOT trying to make him a different person. I love and respect him as the person he is.
I am NOT trying to make him the person I want him to be.
The first one we wrote in 1981 when he was 6 years old. Dream 2: 1989 The next Dream 3: 1998. And, Dream 4: 2010.
Every day Aaron teaches me about courage, love, and tolerance. But he knows he can count on me, my husband, and his brother. He knows Annie, his caregiver will do her best to look out for him. He wants a new housemate, like his former housemate Jack who will be there for him. He knows his grandma and extended family including Ana and his niece love him just the way he is.
And until our dying breaths, we will do our best to make his life happy.
No, I’m not going to inject Aaron with an extra chromosome to make sure he is happy. No, I’m not going to give this thing we call “autism” supernatural powers to dominate his life.
But I will give him opportunities to make choices about his life as best he can–in spite of “autism.”
Yes, I can Love Aaron and Hate Autism.
Autism Awareness Day Marching On
Celebrate each wonderful individual person you meet in this video.
Keep Climbing: Onward and Upward.
All my best,
Mary
Comments:
Are you sitting there thinking, “how can this mother be an advocate for people with autism?” Do these words make you upset? Do you agree? Do you think “Disability World,” thinks differently than “The World”? Can we separate the individual from the label?
Related Article:
Here is another article about Autism Awareness Day asking people to do more than just wear blue.
Yes I can understand why you love your son Aaron very much. While you also hate autism. My disabilities are different than Aaron’s. I also who three neurotypical siblings. All of them younger than myself. All of them have college degrees. Two of them have Masters degrees. While I have high school diploma. Few college classes. By most people’s standards I am less successful. But I don’t see my self as less. Just different and happy. My mom said very recently that she was just as proud of me. As she was my siblings. I am very proud and happy for them. I am happy just being me. With my less than average IQ. That had IEP. Physical therapy instead of ballet. My mom was the best learning disabled Mom. Anyone could ever ask for.
Thanks for your thoughts Angela.
Your mom is right, you are successful and everyone should be proud of your accomplishments. Sure, they are different from your sibs, but each of us has talents, wishes and dreams of what we want in the future. President Obama’s advice to his daughters was to “be kind and be useful”. When you write me a note about the blog article, you are being kind and useful. I bet you do many other things to help your mom and family. Each time you make someone smile, you are a success and giving a gift. Have a happy life and keep up the good work.
Thank you so much. I know Aaron gives you just as much pride. As I give my parents. I was in self contained special education class. There were kids like Aaron. Who were non verbal and some were wheelchair bound. I used to talk to them even though. They couldn’t respond verbally. They would smile so big. Try so hard to verbalize. There are kids like myself who can. Do little more. We do care about all those kids that can’t do what we do. I of course would never speak for Aaron. He has wonderful Mom. To do that for him. I think sometimes. Adults like myself talk over parents. When they share their struggles. Which are hard and happen everyday. We think we are helping. But we make families like yours. Feel guilty we shouldn’t do that. I promise I will try to do. Better job listening to families like yours.
Autism is part of who someone is, even your son, and you shouldn’t hate it.
I know some people think “autism” is a super power which makes them better than others. Aaron would love to have more friends. I you wish to spend some time with him that would be terrific. We are also always looking for personal support caregivers. You must be willing to do personal care like change diapers, cut up Aaron’s food and keep him from choking, give him baths, and since Aaron doesn’t talk, maybe you can figure out what he thinks about “autism”! As expressed in the article, I think of having autism the same way that I think of cancer or some other devastating disease. If someone you loved had cancer, wouldn’t you hate the cancer? In our real life, with every breath in my body– and when I die, his brother will have to spend his life also looking out for Aaron’s basic needs. Each day I will work for a way for Aaron to have the best life he can have in spite of this horrible thing called “autism.” Perhaps you think this is a harsh answer, but as we spend every minute of every day trying to keep our house of cards standing, Aaron’s life is our life–it is our reality. And we parents are the only glue that hold it together.
No one wants to see their child with autism .It just happens and there is little we can do about it.I completely understand where you are coming from.You love your son but hate autism.I get it because no one wants that word anywhere near them.
Tears. Floods of them. Saying everything I have wanted to say but so desperately needed to hear too.
I have hated ASD for 3 years because it’s crippled my child socially, emotionally and physiologically. I and am totally fed up with those who have Aspergers blithely say they’re glad they have Autism, that it’s an ability not a disability, that I don’t know what I’m talking about and that I don’t love my son because ASD is who he is. But I knew who he was before ASD. I watched the changes creep in, I watched him morph into someone I did not recognise. I lamented what was lost and tried to embrace the replacement.
Instead, I cling to the essence that is him and hate the rest.
We really are caught in the middle aren’t we? The Aspies say they alone can speak for people with autism, yet, just the fact that they have the ability to speak means they don’t automatically “speak” for my son or my family. It’s so hard to explain a parent’s love and fears. Thanks for your comment, we have to stick together Sarah. Wishing all the best for you and your family. Mary
Because there are things that are beautiful, does not mean that others things that are not beautiful ugly. Because there are normal people, does not mean that others who are not normal strange. We are shaped by norms and norms are socially constructed. We were told what are good and what are bad since we were born, and we follow crowds opinions toward everything. And that’s probably why we receive education. It teaches us how to be critical and how to judge.
People with disabilities are not unfamiliar with normal people. They are normal among people who also have disabilities. We each are individual first, and as a community, second. We cannot judge people by their appearances and what they have outside. We are to know and understand more about them, may be he or she is just a soulmate of ours.
Disability and EVERYTHING is socially constructed. And, you’re right we are also all soulmates. We live on one planet and are alike. Thanks for your comment.
Hi Mary,
I completely agree with your outlook on autism and autism awareness. Too many people link a person’s every characteristic with their disability. Just because someone has autism it doesn’t mean that all of their traits are because they have autism. And it is perfectly okay to say you hate such the disability even when you have an amazing son!
It’s nice to see someone call it out as it is. Circular logic is a huge issue in the Autism world. We need resources now, not to just speak about it, it’s not a happy thing. Families are suffering, I believe children with unknown disabilities fall under the autism category if they show symptoms on the list of “things to look for”. As soon as children are diagnosed with autism doctors stop looking for what may have caused problems in one particular case. It’s funny that so many families are judged if they don’t jump on the I love autism wagon. I love my son, I hate autism.
Sincerely yours
Glad you see the big picture Kelly. Thanks for your comment. Spread the word. I do love my son. Unconditionally. Glad you’re with me.
I was very touched by this article. I truly believe from the bottom of my heart that you are a fantastic mother. I only hope that one day i will be able to say some of these things about my children. I can relate to some of what you are saying about loving Aaron but hating autism. My younger brother is adopted from Russia, and has many learning and social disabilities because of it. It is often that he’s over reacting to something, and sometimes ends in throwing things or yelling. My parents have had to make the choices that are best for him, despite what he might think at the time. Just a few weeks ago my parents pulled him out of public high school and enrolled him in homeschooling, where he has since done much better. I think it is important to love your child no matter what their disability is, but hate seeing them go through those hard times.
Oh Jane, I’m so sorry your family is having such a hard time. Teachers know about differentiation, it’s not new–somehow I feel like your brother would have had a better chance with more support in school. Talk to me if you want.
It makes total sense to love Aaron and hate autism. I can relate to this since I have a brother with Down syndrome and a cousin with Autism. We love them both for who they are and we would not want to change anything about them. The disabilities were not a choice by anybody and there are a great amount of challenges that come with them. It is perfectly fine to hate the challenges but to love the person.
It sounds like you have a very loving family Andrew. We each have our weaknesses and our strengths, love is what helps us concentrate on the strengths.
I agree with you 100% I LOVE my brother but I alway wish he didn’t have to go through the struggles of having Down Syndrome and I think that is perfectly fine. We go to buddy walks and support local Kid in Action group and are very involved in the special needs community but at the end of the day I wish he didn’t have it anyways. People always tell my family it’s a blessing and god only give children with diabilites to those who are his strongest but I don’t really care. The only thing I would change about my brother would be his disability but then again that’s what makes him who he is! It can be very hard and emotion to think about.
It’s a tricky subject. I understand what you are saying completely. And, the “God only gives…” argument is not true. I believe in God. But there are many families who do not make it. There argument might feel good for them and help them explain things in a simplistic message, but I prefer the interpretation of Harold Kushner a rabbi who wrote the book, “When Bad Things Happen to Good People”. Thanks for your comments.
I agree with this article. I found it awesome how you worded everything. It really helped connect everything. How you stated that you love you son but not his autism I found was great. You can love people with autism but you don’t have to celebrate autism. Autism should not be celebrated. I als liked how you talked about normality. What is normal anyways? There is no standard of normality. We are all different.
You are right Jacob. What is normal? Did you get a chance to read the post about Aaron’s Dream Plan #1. That talks more about normalization.
I think it is perfectly fine that you can say I love Aaron and you hate autism. Neither you or Aaron asked for him to have this disability and that would never change the way you feel for your son. Just by what you’ve shared with us and all the work you’ve put towards him demonstrates how passionate you feel about it.
Thanks Grace. I’m glad you understand.
I completely understand how you could love your son yet hate his disability. I guess some could make the argument that his disability is apart of him but I believe that there is so much more to these kids than that. Once again you’ve showed how strong and passionate you are.
Thanks Destany, guess it’s true when they say you get stronger in the broken places. 🙂
I think this was a great article. I think society looks at Down syndrome and autism in a positive light but then in doing so they love the disability and the individual. Which if they were in the individuals shoes they would realize the great faulty they have with the perspective of loving the the disability. After working residentially at a camp for those with physical and mental disabilities, I have a great respect for people with a disability and people that continually care of those with a disability. I admire your continual love and care for Aaron.
Autism is the disability du jour. Down syndrome had that distinction in the 70s when kids with that disability were the stars in the special education classes. Thanks Katy
I think that it is great that you love your son no matter what even though he has a “disability”. I love how you say that autism doesn’t define who he is a person and I think that is great. I love how great you have been with your son and it makes me motivated with my students for the future.
Thanks Justin, I’m sure you will be sensitive and caring. You’ll be a teacher that helps change lives.
I absolutely agree with your point in this article. Many people do jump to many conclusions when it comes to people with disabilities. Your stance is not to degrade autism, but to show that autism is not something that should be viewed as a great disability to have. Anyone can be an advocate for anything, but still hate that someone may have to live with it. Your stance shows that no matter what you will always be there for Aaron, but you will not be there to say that you love autism. Loving Aaron and hating autism shows how strong you are and how you think of autism. Everyone is entitled to their own opinion and views, so saying of all this just shows how strong and dedicated you are. I absolutely loved this article.
Thanks Tyler, you made my day. We just got back from Aaron’s ISP meeting and it is always difficult to hear about all the things he needs to learn and do better.
This is so far my favorite article I have read. I completely agree with your statement of loving your son, yet hating his disability. I understand that you don’t love Aaron any less despite the fact that he has Autism. The thing you hate is what restricts him, and what has restricted you from doing.
Thanks Morgan. Not everyone understands.
I enjoyed the article and totally agree with the feelings expressed. The person is not the diagnoses. My cousin has Down syndrome and we don’t look at him as a child with Down syndrome we see him as “Kyle” and though he is a extremely happy child and I know that my family wouldn’t change his beautiful personality. I know that he has many challenges that they would change in a minute. He has a heart condition that has almost killed him that is found primarily in children with Down syndrome and he has had many heart surgeries. My mothers brother had Autism but she never speaks of the Autism. His family loved him for who he was and hated the illness for the challenges he faced in a ignorant culture thirty years ago. I think we should embrace people that have challenges and love them for who they are and not their diagnoses.
Your mom has seen a lot of changes in 30 years Anna. It would be interesting to talk with her about her brother.
It is so easy for people to give advice about this or that, when no one can really see your POV exactly. Each system (think of the circles) is different. Each person can deal with changes and challenges differently.
Guess that’s what keeps the world such an interesting place.
I really enjoyed reading what you had to say about this topic. I agree that you have a right to dislike something that you see is a struggle for your son. Autism is a huge part of his life, but it is not what defines him. However, I have had mixed emotions about topics like this before. A girl I babysit has down syndrome and she is the most genuinely happy person I know. Although, I know down syndrome affects other children quite differently, I wouldn’t want her to be any other way. She is such a beautiful person just the way she is and she touches everyone’s life that she meets.
Hi Julie, It’s terrific that your friend is loved and has the resources and supports she needs for a great life. I also have friends with Down syndrome who I love. I wish them every blessing and work hard for their right to go to school, live in the community with their families. I fight for their right to quality medical care. But, I would not inject my baby with the extra “Down syndrome” gene so they would have Down syndrome.
Autism and Down syndrome and Cerebral Palsy and Diabetes … are just things that happen. They are a disability. So, I work with every breath in my body to not have those people become “handicapped” by attitudes, lack of resources and support. Hope that makes sense. It is tricky. But, maybe I’m all wrong and don’t know what I’m talking about 🙂
I choose to read this article because when i read the title, I wanted to read what you had to say about that subject. I definitely agree with this article. I don’t think it should be celebrated in the way that it is. They shouldn’t have a certain day that brings light to one disability because the disability doesn’t make the person who he or she is. They are still a human being with dreams and traits like everybody else. I love that you list all the great things about Aaron and everything that you find so unique. Its okay that you hate autism because the disability doesn’t make up a person. This article really did make me think about things differently. Thanks for posting!
Hi Annie,
I’m glad you liked the article. Now we just have to figure out how we can include people with disabilities in our lives. 🙂
I chose to read this one because it caught my eye since it is typically unusual. However, I do share the same view as this article. I never really understood why people celebrate Autism in such ways. However, I never really voiced because people tend to attack on such things. Therefore it was a nice decision to read an article that had a shared opinion.
We’re definitely in the minority Kyle. But, our side is growing as the autism community gets even more strange.
This article caught my attention because it has a different opinion than you would usually hear from somebody that has a family member or child with a disability. You would usually think they would really push to “celebrate” on days like autism awareness. Reading this brought a whole new light into my eyes and made me wonder why days like this exist. Yes, it’s great to get people thinking about disabilities like this, but should we really have to have a designated day? Autism shouldn’t have to define somebody. In my opinion, people have a hard time looking at the disability and the individual separately. I think it’s great you can so easily see Aaron as an everyday person with dreams and talents.
Aaron is now 39 years old. So I’ve had a lot of years to think about this. The hope is that people like you are the next generation who will be helping children with disabilities grow up.
I think this article is brilliant. I like the correlation between saying you love someone but not their cancer and that is okay, but saying you love someone but not autism is questioned. I do not know why it should be any different than someone having a terminal disease. People who have cancer, or something of the sort are people THEN they have cancer. And the same is someone who has autism. They are people THEN they have autism. I work with triplets who have autism, and I love them to death. They inspire me every single day. I love the way they smile, and hate the fact they have autism. When I was at Miami last semester, I was a part of a group called Autism Speaks. The whole purpose of the group was to get information out there about autism and how we need to help those who are affected by it. Which I think is a great message. Not so much giving it a birthday for once a year, but more creating awareness about it.
Triplets? I can’t even imagine.
My good friend Molly Kelly Elliot works at Miami–I hope your paths have crossed.
It is hard to get to really know individuals, but once you do, you see their magic. 🙂
I love this so much. This is a great way of saying it. As a nanny for triplets with autism, I can relate. They are such a huge part of my life and I love them like my own siblings. I love THEM, not the autism. I agree that a lot of people say that is not an okay thing to say, but it is. Nobody should have to live with autism, but it affects so many lives nowadays. The only thing we can do it to love the person, not the disability.
Loving the person is what it is all about– true for anybody, right?
This article really made me think. It is very clear how much you love Aaron and my favorite part of the article was reading the special things you love about him that make him who he is. I see where you are coming from though about hating autism. No parent wants to see their child struggle and I think it is great to hear about the things you have done to make Aaron have the best life possible. It sounds like you are a wonderful mother who has raised a wonderful son. I am glad that I had the opportunity to take your class and hear your insights.
Thanks Rachel. I didn’t write this to get complements. I do hope this talks about the real issues of autism.
I think that it takes someone to be in the position before they can judge or talk about an issue. That being said, it is clearly shown that you love Aaron wholeheartedly, support him in everything, and want what is best for someone. For someone to say that you don’t love him because you hate autism is not fair.
Thanks Hannah. But some people don’t really believe in “fair” they just want you to believe their way–or you are the enemy. I guess that’s part of why I believe in the “viewpoint epistemology” –seeing things from the other person’s point of view. Hope that makes sense.
I don’t think there is a correct definition of what normal is. No one should be able to say that they’re normal and someone else isn’t. I believe that everyone is the same, and singling someone out is wrong.
Love you byline. I used to have a button and t-shirt with “What is Normal?” You’re right, who knows. If we believe diversity makes us better than “normal” is irrelevant.
I love that you say you Love Aaron but hate Autism. I like that you find gifts in Aaron, an that you look around the fact that he has autism and make the best of everything. I don’t think it is a bad thing to hate autism, you can still love Aaron even though he has it. It takes a strong person to overcome the obstacles that you have, and I think your doing a great job.
Thanks Abby. If you were here I’d give you a hug. You will touch many people’s lives and if you are positive and see the good (like your comment) you will make individuals with disabilities and their families love you.
I sympathize with you when you say “I love Aaron. I hate autism.” I also would say this about my brother and his autism. I love Alex, but I hate autism. It is a blessing that Alex was put into my life and I cherish him every day. Although he teaches me lessons about life and about people, I hate that he struggles with autism.
“Although he teaches me lessons about life and about people, I hate that he struggles with autism.” You really are a great writer Hannah. Alex is very lucky to have you for a sister.
I really liked this story! I think this is definitely a good way to look at things. Though I have never met Aaron, I am sure he is a really great person with a great personality from what I have heard. He seems to have a lot of great traits and has done lots of wonderful things. I agree that Autism shouldn’t be awarded, but people doing great things should, just like Aaron. He seems to have accomplished so many things in his life from all of the stories and to be able to celebrate him and all of the wonderful things he does is great.
Aaron has a way of telling us what he likes and doesn’t like. We’re very proud of him. Thanks for your kind words. Mary
I agreed with your statement that you can love the individual but not the disability. How could you love the obstacles and hardships of autism? How could you love autism when it causes the individual so much pain? You can’t, but you CAN still love the individual. I also agreed that we should give the individual the power and credit they deserve, NOT the disability. While watching the video clip of Aaron in high school, it’s clear that he has gifts and talents, such as weightlifting and wrestling. Those gifts and talents do not have to be credited to the label of autism. I think it was very brave of you to make such a bold statement as “I love Aaron, I hate autism” and I can see how that could cause some controversy for your readers, but I agreed with everything you had to say and I enjoyed reading your blog entry.
Thanks Kailey, I am proud of Aaron and proud of our journey. 🙂
After reading this I really liked how you did separate autism from Aaron. You said that you can see Aaron’s gifts and talents and they you don’t think that they are only there because he has autism. You think that Aaron is a special person even though he has autism. You point out the things that suck with autism and say that they are what sucks and not Aaron. You love Aaron and not autism, this didn’t make sense at first but when you said that you think that after separating the autism from Aaron he is still special.
Glad it made sense Cody. It’s a hard concept. But Aaron is just Aaron. And he is just fine the way he is. 🙂
This is my favorite post I’ve read so far. I love that you’re not afraid to be politically incorrect in order to express your opinion, which is based on true things that you’ve experienced firsthand.
I also found lots of concepts in this article interesting. Under “Is autism the greatest gift” you mentioned the possibility that the reason that people are being exponentially diagnosed with autism is that there is a current trend in society to sort and label people, and I’ve thought of that same notion before.
Also I think at one point, on a similar note, you said something along the lines of “Aren’t we all a little autistic?” which is another thought that I’ve had before. We all have quirks. Some of mine are alarmingly similar to things I’ve read that autistic people do. This obviously doesn’t mean I have autism. This links to the “circular logic” you talked about, another concept I found very interesting and relatable.
All in all, this was very well written and well thought-out and I agree with most everything in it, for what that’s worth 🙂
You know you are in dangerous territory to agree with me Rachel–but I love you for it. Thanks.
I love that you say you love your son but you hate Autism. I love my self but I hate my dyslexia and my other disabilities. I love that you say you will not give it power by celebrating it. I think I will have to change my views on things. I also enjoy the fact that no one really knows what normal is, that always has helped me get through a lot knowing that there is no standard definition for normal. I just love this article. It shows a dichotomy between love and hate, and that it is a fine line, the disability should never define the person. that why I prefer to say the person with this, instead of the for example dyslexic person. It allows the person to define them self, not be defined by the disability.
We have to keep our eyes on the prize and keep moving forward one step, one day at a time. Thanks for the kind words Abby.
This is a complicating and touchy subject. I agree that we don’t know a lot about what causes autism and that we are stuck in this circular logic as a culture. The topic of autism being apart of one’s personality is a double edged sword. Yes I believe autism affects peoples personality but it does not define their personality. I believe that most parents before birth if they were given a chance to choose “do you want your child to have (insert disability)?” they would say no. But later on in life if a parent had a child with disabilities if they were told “we can get rid of (insert disability)” would they get rid of the disability or not? This is a touchy subject and is something that there is no right answer and few people would care to discuss this with anyone.
You nailed it Randy. There is no answer. But these self-advocates who think autism is the best thing ever–I just think they are not using good logic–they really think it does define their personality. Sigh.
I think it’s totally ok and understandable to love Aaron and hate autism. I think that’s a totally understandable reaction. I know there are things about the people that I love (and about myself) that I don’t like, or even hate. But that doesn’t mean that as a whole I don’t love them or myself. And I definitely agree that Autism Awareness Day shouldn’t be a celebration, but rather an eye opener.
Thanks Onnie, that is very reassuring because I’m starting to think I’m in the minority on this one. Please are accusing me of not REALLY loving Aaron. It’s ridiculous, but it still hurts. Appreciate your sensitivity to everyone–you’re a very caring person.
I think it is great that there is a special day for Autism awareness. Having this course and learning about someone’s personal experience with someone who has a disability like autism is truly inspiring. It has to be difficult to have so much criticism from people around you and so frustrating to have your son “diagnosed” with a disability like autism because you do not know the real reasoning behind it.
Criticism is always hard–no matter who it comes from. Thanks for your kind words Taylor. I love all of you–you have been terrific and give us hope for the future.
Living with anyone with a disability of any kind is truly a life altering phase we all will go through at some point in our lives. I love and miss my grandparents greatly, but Professor Mary Ulrich he didn’t ask to be autistic anymore than you seem to hate Autism. Autism does suck and I see clearly all the ways in which it can be difficult and I’m proud to see so many kids in our class, that you teach, stepping up to be friends and teachers and mentors to autistic people in a society thats know for helping number one and not caring about anyone else.
I feel like it’s hard to decipher what is “okay” to say about individuals with exceptionalities. How can one person say that what you say about your child is not right. For example, you saying you love your son but you hate the disease he has is something that people could probably judge you for. People judge others on everything, but you saying that you hate the syndrome or disease, I feel, is completely acceptable.
Thanks Sadie, appreciate the vote of confidence. I hope Aaron agrees. He’s the one who matters the most.
How can you say you love Aaron and hate autism with out saying you kind of hate your son Aaron just a little bit. Thats like saying I love the snow but hate being cold. I see where your coming from with this Ian thats a great point. It’s like when I see fat people drinking Diet Sodas, I just want to yell “JUST DRINK WATER!!”
I would agree with you that it is okay to say that you love Aaron but hate autism. Autism is nothing to be celebrated but it is something for people to be aware of. I think people need to be aware of Autism to realize it can happen to anyone. I think “normal” people should realize that they are lucky to not have Autism. The way I look at Autism Awareness Day is not as a celebration but as strictly an awareness. I also agree with you that it is wrong for advocates to make it seem as though Autism is the greatest thing ever. People like Temple Grandin should be used as examples of how autistic people can be very talented like “normal” people to help create quality; not portrayed as “only because of their autism they know/can do that”.
It’s a tricky slope. According to the “autistics” they think they are better than everyone else. It’s bizarre.
I really enjoyed reading this article mainly because you bring up a great point that may have been a little difficult to talk about. I can see where people are coming from when they say that you hating autism is also hating a part of Aaron. Yet, Aaron having autism does not make him who he is, Aaron makes himself who he is. I thought that was a great point! I’m sure a person that has autism would not want other people to think their accomplishments or strengths are because of them having autism but because they, as a person, made those accomplishments or strengths possible. Give them credit, not their disability!
“Give them credit, not their disability!” Love this Megan. That’s the whole point isn’t it. Aaron is Aaron.
From the moment I first read the title of this post, I was never offended or upset with your words. While I have friends and extended family with disabilities, there is no one in my immediate family that has a disability. Therefore, I do not know the real, difficult struggles these families go through on a day-to-day basis. However, by reading your blog entries and talking with friends and family, I do know that it is not easy. In my opinion, your words only back-up your other argument of “separating the individual from the label” even more. Meaning, Aaron is separate from his Autism; therefore, you’re not a bad person for saying you hate Autism, but you still love Aaron. I liked your comparison to people saying “I love my child, but I hate cancer”. The child’s cancer does not define who they are, so why should a disability? They’re both things that no parent would ever wish upon their child, but they still love them unconditionally either way. So in my opinion, I agree that you can still love your son, but hate the disability he has and still be an advocate for Autism. I’m going to go out on a limb here and say no one loves cancer, but there are still thousands of walks and fundraisers a year for the disease. I’m not saying Autism is like cancer, but why must a disability define someone while other things don’t?
Thanks Maddie. Well said and if you were here I’d give you a hug 🙂
This is very eyeopening for many people. From your perspective, you’re allowed to say that you hate autism, but love your son to the fullest. Not many people have experienced autism through a loved one. Having a loved one with Autism requires much love, care, and attention. It also requires dedication and responsibility. It’s so much work that one won’t know what it’s like until they experience it. Dealing with it from day to day, you see how difficult it is. It hurts you that your son has to go through such a thing. No one should have to deal with that. Just like no one should have to deal with cancer.
Aaron will always be a part of my heart. My prayer is that the professionals who help him also see his great spirit and heart. Miranda, it’s going to take your generation to move us forward–even if it is one person at a time.
Reading this article really helped me understand the title. when I read the title before reading I wasn’t sure how the article would go, and after I read it, I couldn’t agree more. It is unfair to say that if a person is a genius, they must have had autism. Or because a person with autism is very bright, it is only because they have autism. I think that the individuals personalities, or traits kind of over shine the autism in a way. Each person is different, no one is exactly the same. So I think it is extremely unfair to take away their credibility. Meaning not giving them credit for the great things they can do, and giving that credit to the fact that they have autism.
Glad you get it Maci. Some of these young adults with autism who are so into “autistic” drive me nuts. They just don’t understand the history of trying to prove our children are “human”. I don’t want to beat them up, but they are doing more damage than they understand.
I look forward to the day they cure cancer…and autism. 🙂
Thanks Sadie, It is something you just deal with. Aaron is a great guy. He has a place in my soul and heart. 🙂
It is hard for me to imagine the adjustments I would have to make if I had a child with autism. I know that it changes people’s lives forever. Though I would always love my child no matter what, it would be a completely different world if he/she did not have autism. Putting myself into a the shoes of a parent of a child with autism is very difficult. I think it is something you would figure out when it happens. Obviously no parent wants their child to be born with autism or down syndrome, but the child will hopefully be loved either way. I’m sure it’s hard to see your own child struggle with something that is extremely simple to you, but learning and accomplishments probably happen more often. I feel as if you just have to learn to adjust to your environment. That’s the case with every kind of change. Having a child with any sort of exceptionality is a huge change, but something people are capable of adapting to. It doesn’t mean you have to love your child any less; it just means you may have to work a little bit harder to overcome different obstacles in life.
Why do you think that people take it offensively when you say “…I hate autism”? Perhaps it is because people are naive to the effects of autism, they assume that it is a defining trait, therefore, saying “I hate Aaron, I hate autism” can be taken as “I love Aaron, but I hate him for having autism” Which I know is definitely not the case.
Hi Ian, great points. The autism community is divided about autism being the greatest thing that ever existed, or being a burden. Check out some of the comments — some people get very angry. I have some theories, but since we don’t really know or understand autism, who knows? Love to hear your thoughts.
Great website. Thank a lot for posting this. I’ll definitely come to this site to read more and inform my coworkers about this website.
I often wonder if Aaron could have benefited from a Paleo diet. We tried Feingold and many others and it is just exhausting to keep second guessing yourself. Thanks for joining us, I hope some of the article help you.
Hi Mary – as always, a thought provoking and interesting perspective. I think having a day to celebrate autism is just part of how our culture figures things out – we’ve been trained to celebrate sales. I have to admit I’m glad each year for the reminder and to learn more about friends of mine who experience autism, and their families – each year it seems like the picture of what autism is becomes increasingly complete and founded in humanism rather than a reductive medical model. I can remember learning about autism as a teacher in training and thinking how scary it sounded, all revolving around a medical model transferred into a kind of pedagogy of needs and deficits, and that I hoped not to have any kids with autism in my class; twenty-five years and four foster-children with autism and many friends and acquaintances later . . . I feel quite differently. Do we really celebrate how Temple Grandin can count the nails necessary to fence a stockyard? I think more about how she uses her earnings to finance scholarships and works tirelessly to ensure children are included and challenged in all the right ways. Likewise, with our daughter, I don’t think so much about her hands flapping when she’s anxious as how she saves up her money to carefully purchase cards for people, or makes them, and how important it is for her not to forget anyone. Anyway, I think my plea would be for something more diverse than a celebration of autism (or Down Syndrome or…) – my son and many people I know have diagnoses that are so specific. A couple of years ago he had a problem at school and was trying to explain his challenges to the teacher who actually responded “Is it autism? I only know about autism. If it’s not autism I don’t care.” I don’t think that kind of response was the intention of a day for autism or the special autism team that comes into the school to do a de-mystification class with kids in inclusive classes. I LOVE that you are creating these new conversations and that you are so good at hosting them – it’s such a gift and I’m grateful as always to have discovered your life’s work. On another note, I’ve just gone through the planning you did over the decades for Aaron – wow, that’s quite a treasure. I’m going to be doing a webinar at the end of May on person-centered planning and am going to direct people to take a look. Aaron
Hi Aaron,
As always, YOU give me hope. You are doing amazing work. I only wish you were closer so we could work together. Plus, your name is Aaron:)
It’s good to know people are thoughtfully moving forward. We do know a lot more than 25 years ago. That is a good thing.
You and your children are creating the new future for the babies that are born today. We are building on work of hundreds of parents and advocates who laid the foundation. If my work can help even a little that gives me energy to continue.
“The foreverness of it” kind of says it all. For many – possibly most – parents, the hard times come in phases. Terrible twos, middle school angst, high school ups and downs, etc. It’s a whole different ball game with autism.
Don’t apologize for complaining – you’re entitled! Aaron is very lucky to have a mom who makes sure he is safe, healthy and happy. Even when you were in pain, in and out of the hospital, you made sure his needs came first.
You are awesome!
Thanks Becke, hope it helps others. Mary
Hi Mary – Knowing you, I am well aware of SOME of the ways autism has shaped your life. I have no doubt about your love for Aaron – I’ve seen the proof of it over and over again. You are one of the most unselfish people I know, as well as one of the most caring and hardest working. The hard work, as you mentioned, is not the kind that adds to your bank account or gives your life stability. Instead, it’s the kind of hard work that ensures Aaron has a place to live, food to eat, and that forces you to drop everything to deal with crises most parents could never conceive of.
Autism doesn’t define Aaron, and if it were possible, I’m sure you would prefer Aaron didn’t have to deal with it. I would think any parent in the same position would want his child to have every opportunity available to him. Another commenter described it as an avalanche, and I think that’s an apt description.
Maybe it’s simplistic of me, but I don’t know why anyone would want to exalt autism. I have to wear reading glasses, but I don’t celebrate my poor vision, even though it’s definitely a part of me. Am I a bad person because I choose to correct my vision with reading glasses?
Okay, that’s imprecise, because you aren’t attempting to “correct” autism, you’re just trying to live with it, as best you can. More power to you!
Becke, you can tell you are a writer. You build your thoughts into a logical pyramid of ideas. Thanks, as always for your love and support.
This week the staff person who was supposed to work Saturday didn’t show up. So, they called us to fill in. Tom and I went to the house and learned the new guy had a prison record and tatoos all over his body. Geez, not exactly the kind of person who makes us think Aaron is safe and going to blend into the community. Thank heavens he didn’t show up.
Then, the furnace didn’t work.
So we spent 4 hours on Saturday and our usual 8 hours on Sunday just making sure Aaron had staff and getting the heater to work (the maintenance staff we wonderful to come on Easter morning).
I know, I know–there are some who think all we do is complain. But, geez. Not many people have to worry about toileting charts, staff with prison records (when he was a juvenile–he’s now 22) furnaces for their 38 year old son’s house… I’m not really complaining. It is just the way it is.
We had a lovely Easter dinner with the whole family. Aaron was great. I found some jeans with elastic waists and gave Aaron his favorite treats. It was nice to be all together.
It’s just the worries and the things outside our control and the foreverness of it.
I hate autism too, Mary. I can’t understand why *anyone* would say that is not okay.
Said like a mother. God Bless you Alison and your amazing boys.
With every thing which seems to be building within this specific area, a significant percentage of viewpoints are quite stimulating. In any event I did appreciate reading through it.
The new statistics are even higher. Now Autism is 1-50, even higher with boys. Glad you commented, it’s always a risk to put your ideas out there. I hope we learn the cause and cure for autism, but since the spectrum seems to be getting broader every day, I’m guessing the “cure” will be like getting a cure for cancer–Different for different people and decades in coming.
I hate autism. There has been nothing so vial, so despairing, so divisive, so shunning that I have witnessed in all my life.
My son is all the better for my having become the expert when there were none. No Tony Attwood or translator of this enigma could ever make it a thing to embrace, to love, to like, to tolerate.
It has stolen from my son, his brother, and me. It isolated us all. It left us on floors grasping for our lives in grocery stores, seeing only shoes pass by with no loving arms to offer help.
It opened car doors going 50 mph, hearts stopping, wheels screeching to halts, praying bodies were still live, moving, okay.
It flung baseball bats at little children, terrified of it, not knowing if it were joking or bent on killing them.
It stamped “not invited” on birthday invitations.
It put fear in the hearts of pregnant teachers who never before imagined a six-year-old could throw a desk so far and with such power.
It cleared entire gymnasiums and alerted 700 children of its danger… of getting near a cherubic, golden haired angel unaware… caught in its deadly grip.
And it stripped our family of all dignity time and time and time again.
Do I love my child? Absolutely, with all my body, my heart, my mind, my soul, my money, and my last breath. But when someone wishes to paint a pretty face on this horrific demonic devil of a “disorder,” they fool only themself… and never autism.
There are so many profiting from this scourge… never the children… who all become adults. But we don’t talk about the adults with autism, with asperger’s… some of whom most certainly do inflict pain on others, in typical repetitive, methodical, perserverative, verbally gouging fashions. Quite unbearably so…
No, I do not love autism, I am not thankful for autism, and most certainly do hate everything about it.
But I, like most who dare part ways with the proud autism poster child mommy clan, rarely speak of such things. It offends people’s sensitivities. How fortunate for them that their sensitivities are fully functioning.
Thank you for providing a venue for expressing something other than gratitude regarding autism. I am not thankful for autism. It is not a blessing. Autism blesses no one.
Happiness and joy and smiles and love and hope… are the only balms of humanity that autism cannot control. If it could, it surely would take that, too. Living day to day with autism… everything… life itself… can be up for grabs.
I thank God and our own resourcefulness for “surviving” autism. But I will hate it… always… until it dies a miserable death. There is no cancer as ravaging as taking a life, so many lives, and leaving it to poison so many other lives without ever, ever dying. There should be a high bounty for the hunter who can kill this wicked enigma… cold, dead, finished… and leave the living to live and grow and flourish. Until then, I still walk with autism… with living death… still just barely survive.
Just a feeling… but it should count.
Ellen
Wow Ellen. I’m not sure what to say. I’m sorry it is so hard.
You certainly share your frustration and passion with such vivid examples. And, you are right, there are few of us talking about the struggle and saying the politically uncorrect message that we love our child yet autism is not a blessing.
We “walk with autism” and have to survive and not make it a “living death” for our child or ourselves.
One of the best lessons I’ve learned is to look at my son’s behaviors as communication. From his perspective, asking “What is he trying to say?” Then, even the most bizarre behavior has a purpose.
My thoughts and prayers are with you and your family. They are also with all the other families who are trying to just make it one day at a time.
Wishing you every good blessing and a good person to provide respite. 🙂
I understand exactly what you’re saying. I don’t think there is anything wrong with hating autism because it has effect on the individual’s life and those around them. Just because you hate the disability or sickness doesn’t mean you necessarily hate that person. For instance, I hated cancer and still do for taking so many of my loved ones lives away. That doesn’t mean I hated the person, because although they were diagnosed w/ it, that isn’t who they were and are. It’s something that just happened to occur in their lives. As you mentioned in one of the posts there are so many characteristics and actions that they are that makes who they are, not necessarily to diagnosis. I think we forget that people with disabilities are still human and we should view them that way. It can be hard sometimes, I’ll admit, because it is something that many of us aren’t used to and it isn’t considered “normal”. But who’s to say what normal is? Just because something is dominant does it necessarily mean it’s normal? In the eyes of an individual with a disability the things that they do and the way they are may seem normal to them and in their eyes “normal” to us is probably just plain weird. Just a thought.
About 15 years ago there were buttons and tshirts with the “Why be normal?” slogan. Thanks for your comment Maurica, it is complicated isn’t it?
Hi Mary,
Very insightful blog post! I have never truly looked at Autism in this way. I think your opinions are very eyeopening. Coming from your perspective, it’s safe to say that you can absolutely love your son, but not love Autism. I don’t know what it’s like to have a loved one with Autism, but I can imagine that it requires much care and attention. Providing care and love for a son with Autism requires more than just care, attention, and patience I think. It’s about dedication to that person, and promising both to yourself and your son in your case, that you will accept them and love them despite what Autism does to your relationship. I know that it’s probably not an easy process, but I think you are right in what you are saying about loving your son, but hating Autism. Your blog post has made me see that you want to be able to love and care for your son well.
Thanks Whitney. It takes thoughtful people to understand. 🙂
I have always celebrated my son and believed he was a gift along with the Autism which has made us better people until recently…he is now 14 and going through puberty. Our life is getting harder and I totally agree with you…”I love my son so much that it hurts, the Autism is making it hurt”. He is so precious and dear to us but I worry everyday who will look after him when we are gone. Mary, thank you so much for your honesty and it is so refreshing to read your comments. Sending you all a huge hug.
Thanks for your comment Villi. Love is hard, isn’t it. All we can do about the future is try our best. That has to be good enough–it’s all we can do.
Dear Mary,
I really enjoyed your blog post about loving Aaron and hating autism. I used to babysit a little boy who is on the autism spectrum and this was my first experience with this disorder. Your blog really made me look at autism in a different light. I like how you point out that you can love your child unconditionally, but you don’t have to love something about them you can’t control. Although I do not have any children I can definitely understand your want to make everything easy for him and want him to live a “normal life.” I admire your courage and strength to speak about autism in a way others are too scared to do. By doing this I’m positive you are helping out someone who also is close to a person with a disability.
Thanks Maureen, everyone is not so understanding.
I think you make an important point. I do want him to have the opportunity to live a “normal life.” That is different than saying I want to make him different than who he is. He is a great guy, but who wouldn’t want to have things easier for their child?
I found your post about “I love Aaron, I hate autism” very interesting. My family has had a long history of many types of cancer and I remember my mom saying “I hate cancer!” many times throughout my childhood. We do not know what causes the cancer and so we fear it and hate it. I think that as humans we fear and hate what we do not understand. Even if I did understand where cancer came from and why it formed I think I would still hate it because of the pain and misery it causes it’s victims and it’s victims family. I do not think that there is anything wrong with you hating autism. We do not understand autism, but we see the effects of it and the people it effects.
Thanks,
Maria
Thanks Maria. I appreciate your thoughtful example and the empathy which came through. I hope you and your family are past the pain of cancer.
I really really enjoyed reading this post as well as others that you’ve written. But this one in particular really caught my attention and opened my eyes to things that I’ve never realized before. Never before have I heard such a strong opinion from someone who is so close to someone with a disability. The point that really made an impression on me is when you talked about how unfortunately there are a lot of people out there who give the credit for someone’s amazing abilities or skills to a disability. I think that in the past i would have thought something like that and not even considered the other side of it. Its true that there are people with disabilities who have really special talents that set them apart, but I agree with you that we should give those PEOPLE the credit for their abilities. Its so important to love and care for someone with a disability just as they are, but its also important to see that person for who they are outside of their condition. Thank you for this post, i really enjoyed it.
Thanks Michelle. I’m glad that made sense.
Once a person rejects this “disability world” perspective and looks at things from a “normalization” or “inclusive” perspective–then everything changes.
Thanks for going beyond the surface and looking at your ideas and perspective.
I think your blog on loving Aaron but hating Autism had many good, strong, and debatable points. As important as it is to know that a persons disability makes them unique and the person that they are, I completely see where you wish it would be easier for him and for you to help as well. I also agree with you saying that the individual deserves the credit and talent but not the disability. If we had chosen to have a disability, maybe then it would be different. However it is not something we choose and disliking the effects is natural.
HI Rachel, What a terrific summary. Thanks, I hope it all makes sense.
Mary,
I thought this was a brave, passionate post that could only be told by someone like you who has walked the walk.
You are the best Alison. Much love.
Mary,
I see nothing wrong with saying you hate Autism. That you love your son is very evident from you writing and your pictures.When you say you love him, but hate Autism, you are not saying you don’t love a part of him. You are saying you hate the problem (and we don’t know what that problem is) that caused your child to be different. He is not Autism. He is a person with Autism. Big difference, and to hate something that causes our children to have disabilites is clearly a basis instinct. If a disease caused my child to be blind, I would hate that disease. If a disease caused my child to sicken or die, I would hate that disease and work to see it cured. Why must I love cancer because it has become a part of someone I love? No, I don’t think you are wrong to hate Autism. As a special education teacher I see the impact of this disability everyday and I can tell you, it is not a part of the child. It is something that has been visited upon the child that hinders them becoming all they might have been. Great post. Say hello to Aaron for me.
Scarlet from Georgia
I’ll give big hugs to Aaron for you. Thanks for your understand Scarlet. I thought you did a great job of explaining the point I was trying to make.
I get what you’re saying here. My son, Brendan, has Aspegers Syndrome. He is grown, lives in his own place. I recall his not talking as early as normally expected and taking him to speech therapy. He is now highly articulate.
Yet, his AS, as he calls it, gets in the way of ordinary life. There are things and situations that are more difficult for him than they would be without AS.
There may well be abilities he has that are heightened because of AS. But, it does get in the way. And I, as his dad, would that aspects of his life didn’t have to be so hard. So no, I don’t like that he has AS. He’s not too charmed that it gets in his way either.
He is who he is. And part of that is due to AS. But, I would prefer that some ordinary things he has to deal with would be easier for him. And they would be, without AS.
Would other things then be difficult? Yes, possibly. But that’s a hypothetical, his AS is real and present.
Hi Kevin, thanks for your comment it may help some of our readers clear up their concerns.
It sounds like Brendan is doing well and adjusting to the ups and downs of life as a young adult. It would be interesting to hear him describe how AS gets in the way of his ordinary life. Brendan would be considered a success story and I’m sure it is because of the support he got from his parents.
Best wishes always.
Normal is over-rated.
Hi Annie, glad you are here. Maybe I didn’t explain things very well. But “normal” means the ups and downs of life–like everyone else.
I was a bit confused after reading this post and still feel a mix of emotions. I understand you want to separate the individual from the disability or label and that makes total sense to me. At the same time, a disability is a huge part of an individual’s life. By saying that you hate autism or another trait of a human being, I feel like that is also saying that you hate a part of the individual. For example, I am a Christian. A huge part of my identity is found in the fact that I am a follower of Christ. If my mother were to say to me, “Leah, I love who you are, but I hate the fact you are a Christian”, I would be devastated. I want my mom to love me for everything I am, not just selective parts. I think that Autism Awareness Day is celebrating and accepting all parts of an individual. As well, it’s a great way to inform the public about autism.
Leah,
If I may I’d like to say that I think Mary hates the parts of autism that make life so very difficult for Aaron. I don’t think you can compare being a Christian with being autistic in this sense. Also being a Christian on your part is a choice you make as an independent adult. Autism isn’t a choice for Aaron. Maybe I’m wrong in my interpretation and Mary will correct me and clarify.
Great points Alison. Leah, I hope this makes sense. It is a different perspective from many of the “Yea, autism is the best” folks. Maybe if Aaron made his living giving talks about his autism, I would see things differently. After all context is everything. I have tried to outline some of the issues we deal with in the posts on the “House of Cards 1, 2, 3” and “Caregivers 1, 2.” If you have any other concerns email me privately at [email protected]
Hi Leah, you bring up a big point. But being a Christian does not mean you have trouble walking, talking, moving around and have a decent quality of life. It does not mean you are discriminated against and kicked out of restaurants, movie theaters and … even churches.
Autism has forced me to not be able to work for money. Autism has denied me access to be with “normal friends” and community members. Autism has not allowed me to have a childcare for years –when Aaron was growing up.
Maybe I didn’t explain it well, but Autism has caused Aaron and our family much pain. I do not want to wish that on anyone.
Hi Leah. Looks like you got some responses to your comment, but I’ll go ahead and post mine anyway.
I see where you’re coming from with the Christian analogy, but I respectfully disagree. You chose to be a Christian, but autism isn’t something you choose. Let’s take choice out of the analogy. Say you’re hiking in the mountains and get caught in an avalanche. You come out of the experience alive, but lose the use of your legs. Then your mother might say to you, “I love who you are, but I hate avalanches. I hate the obstacles this has put in your way, but I celebrate the strength and courage with which you’ve faced them.” That’s what I think, anyway.
Well put Michelle. The avalanche analogy is great.
Leah, I am so thankful you brought up your concerns. Look at the great discussion you began. I’m hoping this helped because it is a complicated and difficult subject.