Wednesday, May 7, 2014

Breaking the Cycle

In the autistic community we talk an awful lot about how it is simply not okay for parents to say "I hate autism" or "Autism sucks". We explain to people that autism is not something that can be separated from the person and that hating autism = hating the autistic person. There is always blow back. There is always some sort of  protest to this.  Parents claim it is okay for them to exclaim hate toward their child in this manner because their emotions are important, they get overwhelmed... it's all about the parents. 

Society even expects parents of disabled children to feel this way and say things of this nature. They feel "sorry" for parents of disabled children. Society extends pity and forgiveness when a parent to a disabled person does something heinous (like murder) or abusive.. because you know, we are so hard to love and care for. 

So, I don't even know why I was shocked yesterday when a mother of a child with Down's Syndrome said her daughter often says "Down's Syndrome sucks", and the mother encourages this talk because she says it's her child's "self expression". This person believes that this is actually her accepting her daughter. 

Image Description: Background is a blue faded into purple
text reads : If you tell your child
"Don't be mad at yourself, be mad at autism" or
"It's not you, it's autism" you are
teaching your child internalized ableism 
Listen folks, children don't just decide one day to say these things, it is learned. A child's first exposure to ableism is usually from their very own parents. I can not tell you how many times I have heard parents confess that they actually say things like "It's not you, it's just your autism"  or " Don't be mad at your self, be mad at the autism". When parents say things of this nature to their children they are teaching them that their disability/neurological makeup is a separate entity from them. They are teaching them to hate and blame this part of them self. They are not promoting self expression or acceptance of self... they are helping promote self hatred. They are teaching their children internalized ableism.

This is a response I wrote on the particular thread I am speaking of... 

So, I am not going to be redundant because all of the points I would make are already written out... As an autistic parent to an autistic child I have one thing to add... My need for support will never ever trump my children's RIGHT to respect and privacy. 

Saying "I hate autism" or any variation of that is disrespectful to your child. 

I have personally heard these words said TO ME : "I love you but *insert whatever thing people hate*".. It screws with your self esteem,it causes internalized albeism.. It causes those "I hate this part of myself" or "this part of myself sucks" thoughts.

If your children are admitting they think a part of them a parent you are responsible for helping them figure out it's not them or their neurology... if you do nothing to counteract that type of thinking in your children, you are contributing to it... you are allowing them to think they are a problem....

Of course,what followed my reply was disagreement, but there was also something I was not expecting, but further strengthens my stance that expressions of internalized ableism are first taught and encouraged by parents to their children:

interesting that asd somehow prevents you from hating parts of yourself that are causing you problems while the rest of the world is ok with that concept and we all realize we are not hating ourselves, but the things that we must work harder to deal with 

So, society expects me to hate parts of myself, and this person basically tells me it's okay to go ahead and hate a part of myself. 

What kind of a fucked up world are we living in when people advocate that it's okay to hate ANY part of yourself and that it's even expected of a disabled person to hate them self because they have challenges? Can people not fathom that one can have struggles and challenges in their life, while also completely accepting and loving them self? 

I have been down the road of deep self hatred, it's not pretty. I have felt like a burden, I have hated my self for existing, I have been told things I do or can not help make other people's lives harder. I have been told to try harder to not be so... so ME! 

I have scars I look at every day that remind me I have been in that place. I have lingering anxiety due to prolonged self hatred. I still struggle immensely with my self esteem. 2.5 years ago I was in the most deepest darkest place. I have worked hard to overcome much of that, really really hard.

So, for somebody (or society) to suggest that it is expected of me to hate myself or at least parts of myself, makes me want to RAGE. 

Engaging in this conversation yesterday completely validates what I have always thought, self hate and ableism do not naturally occur, it is learned... either by parents, society as a whole, schools, therapists, etc.... 

It's time we break this cycle. If you're a parent that curses your child's disability. STOP! If you are a parent who tells their child " It's not you, it's your autism"... STOP.

If you have a child that exclaims they hate their autism, it's your job as a parent to recognize that is a sign of self hatred and self esteem issues. It is a sign that something is very wrong and is your cue to teach your children how to reflect appropriately and figure out exactly what the root of the frustration is. It is absolutely, positively not okay to encourage self hatred. EVER. 

The ADA, enacted 24 years ago in 1990, states " Disability is a natural part of the human experience" but, yet here we are... living in a society that still sees disabled people as not human. 

As a parent or caregiver to disabled people it is your job to demand that the stigmatization and dehumanization of disabled people stop. 

As a parent/caregiver you are obligated to push the message of acceptance and inclusion in society. 

It is your duty to demand presumption of competence. 

It is your responsibility to fight like hell for the rights of disabled people, along side disabled people. 

Change doesn't happen over night. The more we expose society to disability, demand equality, debunk myths and stereotypes... the easier it will get for generations to come. It is up to us to break this terrible cycle.


  1. This is great! Thanks for sharing.
    Is the last word meant to be Ableism?

  2. I had this conversation with a mom on my blog Facebook page ( just the other day and I finally had to call quits on my end of conversing because I was about to lose it at the upset I felt. "I don't hate YOUR autism, YOU are high functioning, I hate my SON'S autism." "He is a good boy despite his autism." And so forth. I couldn't take it. The mom had zero interest in discussion or engaging, only in expressing her hatred. It broke my heart for the little boy, who can't even be five years old. I told her: He will grow up to hate himself if you say these things. She didn't seem to care.

    1. I don't understand why this is such a hard concept for so many to grasp :( I really don't. I feel bad for the little guy too.

  3. Lots of kids go through a period of hating being who they are, or feeling like they hate something about themselves that causes them hardship or frustration...but with other traits, with non-disabled kids, parents understand that the right thing to do is NOT to encourage the self-hate, or decide that because a child feels frustration at some aspect of who they are, it's okay for a parent to express hatred of that thing.

    To reiterate a counterexample I used on a Facebook thread--If you had a child who was probably gay, but didn't necessarily want to be, or didn't think that trait was integral to his identity...would that make it okay for you to say homophobic things or encourage him in his dislike of that part of himself?

    No, it obviously would not--because homophobic attitudes hurt ALL gay people. Because whether or not he eventually accepts being gay as integral to himself or not, he should be free to come to a conclusion that's right for him free from fear that it makes him a defective person in the eyes of those closest to him, and because attitudes towards ourselves do NOT form in a vacuum, but are inevitably informed by the attitudes of the culture around us.

    People should be free to feel however they do about themselves, but...whenever someone defends your hatred of your child's autism because of the hatred your child bears it, how am I supposed to not wonder whether that's the only attitude towards autism they've ever known, so *of course* they've internalized it?

  4. Thanks for this. May I link to this post on a site I'm creating? It's a "doorway" for parents/family, etc. to autistic bloggers/neurodiversity parents, for them to find such awesome resources FAST and easily. In my experience, I found autistic bloggers by accident, but when I did, it was wonderful. Thank you.

    1. Yes Patricia you certainly may :)

  5. This is an excellent blog! You have addressed a very important issue and addressed it well.
    I was not diagnosed until the age of 60, so never faced this issue. My parents were very accepting and instilled in me the belief that I was different yet as good as anyone else. That I had many good qualities. I grew up knowing, and rejoicing in, the fact that I was different from my peers, so much so that if anything I sought to exemplify that difference in a moral rectitude. Not overtly, but quietly within myself, I followed my family belief in being as good a person as I could be. And that is a difference that is one to be proud of BUT never to be thrust upon others. It was an internal belief that helped me deal with negativities.
    Sorry, I tend to waffle and brain dump...

  6. Yes. Oh yes. And I often worry when I read yet another parent's status about why we couldn't do 'X' because of my ASD kid. I can't help wondering how much of that negativity is being internalised by the individual with autism and contributing to self hate? If you embrace autism, you accept that you will never go and do 'x' because it doesn't suit your kid, but you discover how much more fun it us to do "Y" with your kids and enjoy their enjoyment. I often wonder if these parents think children should come with an Amazon sale or return guarantee, then get pissed when their "purchase" isn't perfect but they can't return it.