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ASPartOfMe
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11 Apr 2024, 12:07 pm

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I am a 42-year-old mother of two boys, the youngest of whom is autistic. It's been eight years since his diagnosis, and I have never—at this point likely will never—believe the cliché that autism has been a blessing or gift to our lives.

This may not sound like a particularly brave or inspiring proclamation. But the culture of autism parenting, not terribly different from the culture of motherhood in general, can be one of toxic positivity.

Social media, fellow parents—of special needs children or otherwise—and even medical professionals have led us to understand that while we may think negatively about autism, we are not encouraged to express it.

We are not supposed to talk about how hard it is watching your child be different in a world that fears differences—how venturing out into public can be as frightening for you as it is for your child. We're not supposed to say how sad it is to admit he will realistically never catch up to his peers, live alone, or raise a family. Or how lonely we as autism parents sometimes are.

Instead, we are supposed to "embrace the journey." We are supposed to "find the joy." We are supposed to appreciate that "God only gives these children to those who can handle it."

At least he's happy. At least he's healthy. He could be non-verbal. He could have cancer. He could have been born with a pig's tail.

I recognize that when someone offers this perspective, the sentiment is well-meaning. Indeed, that's not to say autism is without positive effects. When I started teaching high school English in 2004, I feared autism. My knowledge of it was limited to my textbook education, and when I experienced it first-hand as a young teacher, I found these students' impenetrable ambiguities sometimes disruptive, and their parents overprotective and overbearing.

These children were frequently isolated and ostracized: while often so bright, their quirks and social inequities made them, at worst, the "weird kids" and, at best, patronized by a charitable laugh or smile from a benevolent peer.

The only prospect I dreaded more than having an autistic student in class was bearing an autistic child myself.

My experience as an autism mom has infiltrated my teaching. Practicing kindness and acceptance has trumped teaching content and skills. I speak about my autistic son regularly—his traits, his oddities, the good and bad days—to normalize autism for both students with autism or those who have been affected by it.

I connect with some parents of my autistic students on deeply personal and emotional levels. I make extra effort to know and understand these students, to get the other students to know and understand them. I have become the Liberty Island of autistic children: give me your awkward, your lonely, your excluded masses yearning to breathe free.

This is, inevitably, mirrored in my personal life. I am more patient, understanding, and tolerant of both my son and the sometimes cruel people around him. It has taken me growing time, but I now share him with the world in all his autistic glory.

In my classroom, I speak openly and candidly about him. When I see strangers in public observing or whispering about him, I politely address them—not to shame or criticize, but to explain, educate, and enlighten about his autistic behaviors in hopes that they will then explain, educate, and enlighten others.

I must admit, however, that my overt and raw discussions about my autistic son are also self- serving. While currently in third grade, where both students and staff love him, the scary worlds of middle and high school are rapidly approaching, and, despite my personal evolution towards autistic individuals, I'm sad to report that the demeanor of the 1990s bullies with whom I grew up has endured.

I know he will be picked on. He will be laughed at, and even worse, he will be excluded. Therefore, my stories and discourse about him are also thinly veiled pleas: "Please be nice to him. Please don't pick on him. Please protect my son."

As an autism mom, I have experienced this isolation myself, even amongst my loving and compassionate friends. While they ask about him and his progress, our parental anecdotes will never be equal or even similar. They laugh when I laugh, they cry when I cry, but it is done out of kindness, not understanding.

They would likely be sad to know I secretly endure their children's accomplishments with resentment or jealousy. While they express bittersweet sentimentality over their children growing up, my own child is stuck in perpetual toddlerhood, and his growing older only brings new anxiety and fear.

The most genuine and authentic connections come from other autism moms, usually formed organically from special needs classes or ASD Parent Support Groups. Even then, however, this unfiltered and unadulterated communication about our autistic children is limited to the safety of our private conversations.

And I can admit to them—and now, to the world—that while I have accepted this road we are on, have, and will continue to fight for my son and believe in every ounce of his potential, I will never be grateful for this tumultuous journey.

I will forever torment myself by wondering what life for him and us might have looked like. As with all grief, I will still cry in anger or sadness at unexpected times about the loss of the life we'd thought we'd have, that we planned so carefully for. I will always wish I could take his autism away.

Before I am judged for this perspective, let me make it plentifully clear: I love my autistic son, purely and desperately. But, my experience as an autism mom has allowed me to fully realize and appreciate the paradox that two things can be true at once.

Mothers, fathers, and caregivers do not have to gaslight themselves into believing that loving our children means embracing and loving autism. The truth is I will forever love my child, and I will forever hate that he is autistic.


Hating a part of a person is not accepting them. We all find difficult, do not agree with parts of people we love. But hate takes it to a whole other level.

IMHO her problems seem to be twofold. While acceptance by peers is important, it is not the be all and end all. She had an idea of what her son would be but he has never been that person. There are plenty of things I thought I would be that never came to fruition.


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BillyTree
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11 Apr 2024, 1:38 pm

Judging from my own experience of who I am you can't seperate a person from it's autism. Autism is not a prop like a moustache you can shave off. If I were not autistic I would not be myself. You might say that would be a better person but it would be a different person from me. What she's saying is equally stupid as saying "I love my son but I will forever hate he's a psychopath!"


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Barchan
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12 Apr 2024, 9:48 am

"Love the sinner, hate the sin" (and equivalent rhetoric) is emotional abuse.



carlos55
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12 Apr 2024, 3:25 pm

There`s a lot of emotional blackmail of people dictating parents how to think about their child`s autism, many of these parents particularly mothers are already vulnerable and suffering from mental health problems themselves.

As long as the child is loved and taken care of properly they are free to think how they like about any medical disorder their child has, whether it be spina bifida or autism.


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Edna3362
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13 Apr 2024, 8:32 pm

This is the kind of power parents have.
Really. And it's just this easy to raise an autistic hating their autism.

Had I've been raised this way, I would've killed myself for an insignificant detail that sets me apart from everyone I've known.

Distance myself more, had my family ever emphasized and talked around my condition instead of telling them to shut up about it.

I already don't feel good overall as a person (autism or not) even if I am loved as a person (which is the current reality).


But in honesty, it really boils down in perception.
It boils down to where the parents learn about autism and what they think is best.
It may be right, it may be wrong. It mattered not.

I'd rather pray that the parents AND children will have more choice to go beyond the beliefs of whatever was instilled to them; especially when the day comes that belief no longer works or if it starts to harm or endanger them in any way.

It's that part that is a big deal to me -- the beliefs instilled in youth or in initial impressions, and the power to choose beyond that and while living in such instilled belief.

I was raised to believe that I have more choices.
That hating or loving autism is a choice.

I made my own discernment and choice, and a judgment call for my parents (and family) that I'll deal with the autism on my own regardless of their sentiment.
I'm aware not everyone has that level of discernment, let alone choice.

However, there is always an unintentional harm when it came to parenting autistics. Always.
Be it ignorance or acknowledgement, love or hate.

If the belief of hating autism will work out for these individuals like rising their potential and meet standards of NTs as a way to pave for independence -- great.
Because I know the power of hate as a means and how to make do with that.

But if not? Or if it doesn't work anymore?
Who's gonna undo that for them?

If they want to grieve for something that never will be forever -- it's their choice, their sentiment, everything that leads up to said choices because of their perception of reality and their actual reality.

Let them as a means to process or bare the nuisance of the human emotions, drawn from whatever means.

It's no different than drinking or smoking or being a workaholic or stare at the wall all day long exhausted except in a form of blogging and posting rants about caring for an autistic child.

I'd rather pray it is not destructive or create some sort of plague that harms autistics upbringing.
Or worse, perpetually creates a generation of parents, all into discrimination or claim that hating the autism and loving a child is the only morally right way of approaching autism as a situation.


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autisticelders
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14 Apr 2024, 2:01 pm

carlos55 wrote:
There`s a lot of emotional blackmail of people dictating parents how to think about their child`s autism, many of these parents particularly mothers are already vulnerable and suffering from mental health problems themselves.

As long as the child is loved and taken care of properly they are free to think how they like about any medical disorder their child has, whether it be spina bifida or autism.


Thank you Carlos55. <3

I am the mother of a disabled adult child.
Not a day goes by that I don't grieve for her struggles in this world.

Not a day goes by, but that I wish she did not have such pain and sadness, that she could do the things she keenly wants to do, but will never be able to do.

Not a day goes by where I do not wish I could relieve her of her burden and her struggles, her self hatred, her sadness, and that I do not wish to do everything within my power to make things better for her.

Not a day goes by that I don't love all of her with all of my being.
She is beloved, precious beyond description.

I think what many parents are saying is not that they hate the described diagnosis as much as they say they hate to see their offspring struggle and suffer, and they(the parents) hate to be helpless to do something about that to make things better.


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carlos55
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14 Apr 2024, 2:52 pm

autisticelders wrote:
carlos55 wrote:
There`s a lot of emotional blackmail of people dictating parents how to think about their child`s autism, many of these parents particularly mothers are already vulnerable and suffering from mental health problems themselves.

As long as the child is loved and taken care of properly they are free to think how they like about any medical disorder their child has, whether it be spina bifida or autism.


Thank you Carlos55. <3

I am the mother of a disabled adult child.
Not a day goes by that I don't grieve for her struggles in this world.

Not a day goes by, but that I wish she did not have such pain and sadness, that she could do the things she keenly wants to do, but will never be able to do.

Not a day goes by where I do not wish I could relieve her of her burden and her struggles, her self hatred, her sadness, and that I do not wish to do everything within my power to make things better for her.

Not a day goes by that I don't love all of her with all of my being.
She is beloved, precious beyond description.

I think what many parents are saying is not that they hate the described diagnosis as much as they say they hate to see their offspring struggle and suffer, and they(the parents) hate to be helpless to do something about that to make things better.


I`m sorry to hear of the hardship your going through

Its my opinion that people shouldn't be afraid of just coming out and saying how they feel, its ok to hate your kids autism, just as much as its ok to hate your own if your autistic.

You are free to view your child`s autism is separate to your child, just like if your child had epilepsy that too would be separate

Some autistic people want to be autism rather than have autism, obviously that is their choice, others think differently.


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16 Apr 2024, 7:08 am

As long as you're talking about yourself I think you are free to express hate towards you hair, teeth, fat belly, crooked nose, colour of your skin or autism - or whatever thing you are dysforic about. But when you are refering to anyone else you have to choose your words more wisely.


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