Hating Autism And The Damage It Does
If this article challenges you, it may be a good thing. Id encourage people to read this with an open mind, even if your instincts are telling you to oppose it.
I used to have a love/hate relationship with my autism, especially in the early days of knowing I was autistic. To this day, I have followers on who hate their autism too. And in most cases, that hatred was taught. By society, by fearmongers on the internet, by people closer to us, whoever.
But for a moment, Im going to ignore the historical hatred directed at me for being autistic . Instead Ill concentrate on a former student of mine: a 12-year-old boy who was the perfect poster child for the type of autism that suffers the most hatred.
During my time with this boy, I changed his soiled pads more times than I can count. I had to deal with physical attacks, which he couldnt possibly have known would hurt . I had to physically stop him putting himself in danger, and catch him when he ran away. I rode in the back of an ambulance with him when he had a seizure during our end-of-year celebration meal.
And during the whole time, I never hated his autism.
Ever.
He deserved better than that. Because in hating his autism, I would be obliged to hate his quirky approach to life, his habit of patting his hands against me to show that he liked me, his near-unceasing laughter, and his unreserved enthusiasm that had never been dulled by peer pressure.
Advice From An Autism Mom: Don’t Give Up Just Get Out
May 23, 2017
This is a post by Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum and an Autism Family Partner at the Childrens Hospital of Philadelphia . Kim is also the author of a blog about her two children with autism, at autismmommytherapist.wordpress.com. Kim is also the author of “Raising Autism: Surviving the Early Years.”
My husband Jeff and I have two sons, an almost fourteen-year-old and a ten-year-old, both with autism. My eldest is on the more severe end of the spectrum, and also has a diagnosis of OCD. My youngest is on the milder end, and has a secondary diagnosis of ADHD. For the most part, they are both happy, successful in school, and the two most loving children any parent could ask to raise. At this point you may be rolling your eyes, or maybe you want to know our secret. Friend, Im going to tell you. Ready for it?
Its simply this- get them out.
Yup, the left ones bigger than the right. Must be a running thing.
After a period of time where I truly felt Id entered a witness protection program I decided our strict quarantine had to go, and we began our ventures out. I chose our local mall as our battle ground because we could ostensibly go there year round, and at the very least I could attempt to get a drink at Starbucks.
I have my priorities.
Eventually we even conquered elevators. It was a momentous day.
Its one of my favorite times too. It feels like victory.
It takes several villages to raise two autistic children.
At The Crossroads Of Trauma And Autism
8/25/15: “You know I love my little girl more anything but I hate autism so much. I hate that nothing comes natural it all has to be taught. I hate the meltdowns and lashing out. I hate the self injury behaviors even more! I hate that even with meds, we still have nights where we are up all night. I hate the isolation and not having a normal lifejust simple things we can’t do. I hate that she can’t speak or even understand me! I hate that she won’t eat and lives off Pediasure! What I really want for her more than anything is happinessto be able to take her places without all the screaming even if she is in a damn stroller happy flapping away, I don’t careas long as she is happy! Let them stare all they want! I will always hate autism but I swear if she could just be happy or happy a good bit of the time maybe all the other sh*t won’t make me so damn sad! Sorry for the vent Just in a funk right now!”
8/14/15: “OMG!!! My daughter is driving me crazy!! She will not sit still, has been trying to break into the kitchenI’ve had to replace the mayo three times this week. She’s pooped and smeared she’s hardly sleeping… Uuugh, three more days… Almost forgotshe won’t let me turn any lights on so we are sitting in the dark.”
8/6/15: “Our day has been spent shredding books we love. Tomorrow will probably be spent asking for these books.”
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Your Child With Autism May Bring Out The Best In Your Family
“Our son is the oldest of our three children, and he has taught us all the importance of kindness, patience, compassion, listening and respect. These attributes allow our family to keep a very grounded and real perspective on what is truly important in life vs. what is fleeting, frivolous or simply not worthy of our energy.”
Stephanie Martin, Greenville, South Carolina
Trust Your Instincts Even With The Doctors Advice
What I wish I knew way back then is that its OK to get a second opinion when your gut tells you the doctor is wrong. We knew that Gavin had autism. Yet, we were told he had ADHD, that he had anxiety and depression. It took his first psychiatric hospitalization at age 8 for a psychiatrist to finally say he thought Gavin had Aspergers. We were always told, Why is a diagnosis so important to you anyway? Its just a label. Because the right diagnosis means the proper treatment. Now he has a job, hes involved in school activities. Hes going to college in the fall to become a chemistry teacher.
Shannon Smyth, Lake Ariel, Pennsylvania
Read Also: How To Write An Autistic Character
Thank You For Reading My Autism Blog
On a positive note, thank you to everyone whos been supporting my blog. Thank you to everyone who celebrated with me when Charlie said his first word. Thank you to everyone who had my back today when these mothers attacked me. Thank you to everyone who follows The Autism Cafe and engages on my posts. Thank you to everyone who takes the time to message. Thank you to the lurkers too . I appreciate you just for reading this right here right now. Your support means a lot. This blog wouldnt be the same without all of you. You are my people.
Sincerely,
An autistic mother of an autistic child
To see more of my autism blog posts,
To see more of my mom blog posts,
I Empathize With The Child
I write this with tears running down my face and my heart in a thousand piecesagain.
I think of the mothers who use the bites of their autistic children to justify their I HATE AUTISM speech.
I think of this womans child and the daily struggles that motivate them to defend themselves with their teeth. I feel their pain as if it were my own.
I think of ALL autistics whose metaphorical teeth have been pulled out how theyve lost their rights to say no, their rights to self-defense.
I think of all the comments in groups where autistic people are assaulted for requesting non-autistics stop saying they hate autism.
Recommended Reading: What Is High Functioning Autistic
Be Grateful For The Strong Connection You And Your Child Will Forge
In reflecting over the last 24 years of our journey, I will say this: My son gives me 100 kisses and hugs every day, he is always happy to see me and he will always be with me. He doesnt lie and he doesnt judge. He is welcoming to anyone that wants to enter his world. On the other hand, my father sees me about twice a year since we live 1,000 miles apart. So which dad is better off? Its not better or worse, its just different. Once you understand that, your road will be smoother.
Scott Sanes, Great Barrington, Massachusetts
Autistic Son Hates School But Loves Arts And Crafts
- Lots and lots of arts and crafts and hands on activities I believe that I started losing interest in school in junior high and high school because there were so few hands-on activities. I donât know where our school system got the idea that older kids donât need hands-on instruction. But I completely disagree with this idea. I donât think a kid ever outgrows the ability to enjoy hands-on activities.
- Remember the point of learning is to grasp the subject matter being taught, not just memorizing facts.
- Type of pencil used It is amazing what a difference changing from the standard #2 pencil to a basic, plasticBic auto pencil has made in our house .
I donât know if youâve noticed, but standard pencils are kind of scratchy when you write with them. Plus they get dull so quickly, you have to re-sharpen them almost constantly. !.
The auto pencils are a bit more expensive, but they are SO worth it! Nathan still doesnât like to write. But he now is more willing than before.
These are just a few of my favorite ideas.
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When It Comes To Autism One Size Doesnt Fit All
If you put a PlayStation game into an Xbox, would it work? Of course not. So does that mean the Xbox is broken? No. The same thing applies for a child with autism. Just because they dont learn the way typical children do doesnt mean there is something wrong with them. It means that we as parents, caregivers, friends, neighbors and teachers need to find different ways to try and make a connection.
Laura Jones, Lambertville, New Jersey
Were Not Safe And Shes Not Safe
In interviews, parents across New York State described the same scenes of fear and helplessness: being attacked by an adolescent child, now bigger and more aggressive than before. The dread that their child might turn on a younger sibling. Their growing helplessness as their childs self-injuring behavior relatively common among autistic children escalates. The emergency room visits when there was nowhere else to go. And their eventual realization that the family home may be the wrong setting for their child.
A father in Brooklyn described his anguish at watching his autistic son smash his head repeatedly against the hardest nearby surface: the wall, the floor, the detachable shower head. A mother in Albany described her daughters wild behavior: endless twirling, chewing on walls. Earlier this year, the girl was found in the yard with a broken arm, having either jumped or fallen out of a second-story window.
One of the glaring weaknesses of the system is there is no real option for families whose children fall into that category, said Christopher Treiber, an associate executive director at the InterAgency Council of Developmental Disability Agencies.
A half-century ago, many children with autism ended up in notorious state institutions like the Willowbrook State School on Staten Island, where those with developmental disabilities were left untended in filthy wards or strapped to beds.
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Our Home Is Safety Proofed
Youre probably familiar with baby proofing a house. But while most families can take down the safety gates and doorknob locks once the child ages, families with children on the Autism Spectrum often have these items and more protecting their child from their homes inherent dangers. This is because many children on the Autism Spectrum are prone to behaviors that can bring about self injury.
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I Would Never Wish This Journey On Anyone Writes A Mom From Australia
A little over a week ago I shared some of my feelings around living with children with autism.
I was absolutely blown away at the response from the post. Thousands of carers feeling heard, feeling validated.
Each of us loving and adoring our children more than anything, but acknowledging the exhaustion and the heaviness that comes with raising a child with additional needs. Society would have us feel its not okay to feel tired, its not okay to feel heartache. Autism has a giant puzzle piece representing it that we are all supposed to worship. Carers needs neglected and forgotten.
You only have to speak with any carer thats battling the NDIS to know how disregarded we are.
Today in my memories came up a post I had written a year ago, this post also blew up. I received death threats, I received message after message telling me I dont deserve to be a mother – I was even drawn hanging from a puzzle piece…. However – just like my recent post, I received message after message from exhausted carers, thanking me and for showing them they arent alone in their feelings.
So obviously this is still such an important message to be heard. Its okay to be exhausted, its okay to hate something that causes your child so much pain and anguish… you can hate a disability and still love your babies and being a parent.
So… Here are my words from last year… I hope it helps some of you realise – you arent alone, and you are doing an incredible job.
But I hate…. Autism.
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Assume That Most Of Their Identity Is Down To Autism Rather Than Personality Choices
The phrase yeah, thats his autism is one I have heard far too many times. Even in professional circles.
Yes, our autism influences us. Yes, it often gives us particular habits or interests unique to us. But to say its just his/her autism is implying that we dont get any say in the matter.
I remember when I was running a chess tournament in a special school . One crucial match was scheduled for a day when the school was doing a special event. Throughout the day there was only one opportunity for this game to be played and ten minutes before the start, one of the students got a migraine and had to go home.
This stressed me out because I was relying on that matchs result so I could drive straight to the trophy centre after work and have the prizes engraved . And Im fairly transparent, so people could tell I was bothered by something.
When I told one of my colleagues I was feeling stressed, she immediately asked me oh dear- is it because todays been a break from routine?
No, it wasnt.
Some other examples:
That said, there is a balance. Like I said, autism does have an impact on us. I used to watch Independence Day on video over and over and over and over again when I was twelve, and you could validly say that this habit was influenced by my Aspergers. But the main reason it happened was because Independence Day was an awesome movie!
Children On The Autism Spectrum Are Not Dumb
Kids with autism have the potential to be absolutely brilliant. Theyre also talented, philosophical, kind, and creative. This is something much of society fails to see, but in truth, the autistic mind is simply wired differently than those not on the Autism Spectrum. Hans Christian Andersen, Emily Dickinson, Albert Einstein, Bill Gates, Michelangelo, Mozart, and Sir Isaac Newton all are said to have exhibited autistic tendencies.
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I Hate My Autistic Son
I hate my autistic sonI cant help it, my life is constantly terrible. I spend as much time as work as possible. The worst part is that I am supposed to pretend that I am happy about it. When we get together with the other parents and everyone is pretending their kids are as normal as anyone else. They are not. All of us secretly wish they were never born.I would never dare tell my wife this. She is in total denial. Every time he screams or has a breakdown I just wish he would die. I believe that violence is a lot more common than you think. but my wife and I always control ourselves. I can't stand it though. Why has god done this to me, and why instead of having support are you not supposed to say this. It is terrible, and I did not deserve it yet I am supposed to pretend life is just great.
I Hope Your Autistic Child Never Forgives You
I included a few representative screenshots to give you a good sense of the situation. There are a lot more. This is real and it is not a rare occurrence. People tell me Im not autistic and that I couldnt have autism because I hate autism. Not gonna lie, these particular attacks had me laughing.
While I dont share their views on autism, never would I ever insult them as mothers or make them feel less than, yet they do that to me. Im not going to write much more on this subject but I want readers of my blog to know that I, an autistic adult, do not speak for all of us, and in fact, a fair number of autistic adults apparently hate me.
From now on, I wont engage or respond to any of these comments. If youre #actuallyautistic and reading this, and I know you will, I ask that you please respect me by not commenting on my posts anymore. Just go away. Stop browsing my page and unfollow me. Move on! I know how you feel. Really, I understand youve said it enough times. I bring shame to the autism community. Oh, and dont bother repeating that Im torturing my son with ABA therapy anymore either. Ive heard that one enough too. Were all grown adults and we can agree to disagree without tearing each other apart, or at least you should strive towards that.
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