Wednesday, April 30, 2014

"Autistic Healers Expressions of PosAutivity: #AutismPositivity2014″

Note: This post is part of this initiative: Read more beautiful posts at this link.

In the last week alone I have faced four different "Newsworthy" negative reports on Autism advertised as "breakthroughs, " "understanding Autism," or "valid research", and each one has left me in tears because these reports are what the world listens to. But then I found a glimmer of hope in the Autism Positivity Flashblog and my Autistic community. We can be a voice. I can be a voice.

I have several friends, family members and people in my community who are Autistic. They are a diverse group of people with different needs, beliefs and temperaments...but the one aspect I often find my Autistic friend's have in common are their healing personalities. The lie that Autistics are non empathetic or non communicative is exposed when I am around each of them. They are the people who children and animals flock to, whether they want them to or not due to sensory issues. My Autistic friends are often the people whom the outcasts of society, the abused and the down trodden go to for a listening ear, for compassion and because these people groups feel the Autistics are safe. Generally we are. It is very rare for an Autistic to not be safe, innocent and pure of heart. In the news we hear the horror stories but most often, there are other factors at work that should be exposed. The very stats speak for themselves; the number of Autistic people that commit crimes in the overall population of Autistics verses the number of Nuerotypical people that commit crimes in their overall population makes the issue stunningly clear. Autism does not create violence. Like in any population group, there will be issues but in general, the Aspies I know are trustworthy, kind and considerate.

 I am an Autistic and I am 30. I have three children and am married to an NT. We have a happy life. Contrary to popular Autism propaganda we have had a happy 12 year marriage and while having children was hard for me at first, I now love being a mom. While it is true that I can not face meal time every day without my husband or support system nor drive in the city due to executive functioning / Dyspraxia issues, I also KNOW I give back to the world with my unique set of gifts. Without a doubt Autistics need more support because the current culture is not set up for us. Instead of people fighting Autism we need them to fight ignorance and stigma. 

There are many parents and practitioners who claim they are reversing autism in children.  They are not "reversing" the way the brain is wired...what is actually happening from the perspectives of Autistics is that they are helping deal with sensory onslaught or other symptoms of Autism that interfere with social interactions and minimizing them. For example, many Autistics have a leaky gut so going off of gluten really helps them think clearer to deal with sensory onslaught of the loud culture we live in, but our actual brain wiring is still unique and different. Cognitive therapy also helps re wire some anxiety that we experience due to being "differently wired" and can aid us in being thought of as more "normal" but we are still Autistic. Just with less "symptoms." Technically these claims of reversals are actually just improving assimilation, which is fine in some cases but it needs to be addressed as it is; an ethical question that needs serious consideration. Many Autistic adults who can speak for themselves will tell you this. My son does not seem very Autistic on the outset, because we have worked with him since age 3 on eye contact and anxiety so he is less bullied, but he still works from a different mind theory than an NT.

I may not fit into society the way it wants me to but I still am valuable and live a worthy life. I feel that if we get too genetically focused on Autism and too focused on "eradicating Autism", this issue will become quite akin to what Hitler wanted to achieve. Let's not go there. Diversity is the spice of life, we can help disabling features while still respecting the core. (See this important post for more on Disability In an Ableist World by AutisticHoya)

My children and I are on the Autism Spectrum. I do not view us as diseased or needing to be "cured." Nor do I like being targeted for drugs from birth. Professionals need to hear the voices of ACTUAL Autistics. While we do have some harder things to deal with in life due to the additional issues that can come with Autism like Dyspraxia, Anxiety, Sensory Overload,  Executive Functioning issues, ADD, Dyslexia or being non verbal, each case is different. To balance that out there are many beautiful attributes to Autism. Cognitive therapy goes far to help with aspects like anxiety. (I do NOT recommend ABA. See THIS link.)

Autistics are beautiful contributing members of society when given the chance to use our gifts in our own ways. For instance eye contact? It's NOT about us not socially connecting...It’s about this:  In the Autistic community there are beautiful voices of the non verbals who have plenty to say:   How about we combat stigma instead of combating Autistics and re frame our ableist mentalities on what it means to be “normal”?

Some of the "normal" adults I know are unhappy, unaware, restless, discontent and still searching for their meaning. Even if they are in fields they love or graduated top in their class. I have different goals for my children. I want them to grow up self aware. We teach them about handling emotions, differing faiths, cognitive therapy, yoga and meditation for self healing, boundaries in relationships...and to live in the NOW. I tell them that they already are WHO they are in this moment. They do not have to wait to be a "grown up" to experience life. They do not have to answer the stupid question,"What do you want to BE when you grow up?" I tell them to BE NOW. When they are hopefully old and grey, I KNOW they won't look back and say, "Boy am I ever glad I took the job in that firm." or "Those years of expense in school were worth every penny and the lack of time I had with the people that mattered." Instead I want them to say, "Life is tough and beautiful. From the time I was young I learned this but I also learned that I mattered. To stay connected and compassionate, from childhood I learned to engage in the outdoors, with the few people who mattered, and with myself. I lived well despite what work I did or did not do. The wisdom I gained was not just for knowledge's sake and I learned to be comfortable with myself no matter where I was. I lived in the NOW with meaning. I embraced who I was and became what I am."  There are beautiful and messed up people in “normal” wiring AND Autistic wiring. We have our struggles and while Autistics DO need understanding and more acceptance, we don’t need ignorance hurting us too. I celebrate my children’s differences. I celebrate my brain. It may be different but it is worthy. It may be hard at times but the hard moments have taught me compassion. Many Autistics are so empathetic they shut down because they can't handle the onslaught. They just need to be allowed to stim and be different with some aids in overcoming the other hardships that may come along with their unique wiring. Autistics do need guidance when it comes to relational boundaries, sensory onslaught and some forms of communication, but once guided with the appropriate information (generally found from other Autistics or GOOD cognitive therapists) they make the world a better place. Most Autistics are the healers and the advocates, the pure of heart who simply need to find their own way of making the world a better place while being true to themselves. Because of the way we have to fit into the world, Autistics have amazing  RESILIENCE Once they find this balance of living in the paradox, they hugely participate in the world we all help create.

**To all those who feel different, lonely or misplaced...we got this, we are beautiful, we are going to be alright...keep the fight and live TODAY:


S said...

Think of a room full of autistic children/Aspies and what happens when an NT comes into that room ? He may feel like an outsider.He may not not be able to fit in. He may find Aspies "strange", "quirky" etc.etc.
Similarly, if an Aspie walks into a room filled with NTs, then he may also feel like an outsider.
But in both cases, in their own respective communities, both are so comfortable...I feel that problems of NTs/Aspies...etc. etc. are problems of human perspective/human perception. Generally, we don't like to accept those behaviours which are "opposite" to us. It is also a majority-minority (greater in number versus lesser in number) problem...if you happen to be the one who is in the group containing less people then you are considered weird/outcast. So, it is a problem of relativity, a problem of comparision after all.
Weird according to whom...according to which group ?
A person is less functional when he is compared with a more functional person but on his own he is ok, he is happy...I see my dysfunctionalities in this manner...I am just more or less functional/dysfunctional than someone who is more or less functional/dysfunctional than somebody else...therefore, I think that the medical community/psychiatric community has no right to even say that something is "wrong" let alone try to "cure' it.
What "I am" does not depend on nor does it equal to "what you think I am ".
I am what I am ..if I don't try to change you (NTs) then why bother to change me at all ?
On another note, just suppose, if Aspies start a movement of curing and reforming those typical "NT's ? Would NTs even accept that in the first place ? No. Because they think that there is nothing wrong with them. Rather anybody who differs from them is wrong...
Such is the nature of NTs, who claims themselves "civilized" yet their motto is if you don't agree with me you are wrong...-can't there be peaceful coexistence without trying to change each other ?
this is what I feel about this issue. Nobody is greater or lesser than the other...we may not be similar/same, we may be different but difference does not make anybody "above" or "below" the there is no question of trying to cure anything..."acceptance" is the greatest cure ...rather than me trying to make eye contact, why don't you hold my interest ? or simply give me a hug ? or just walk away without labeling me ?
Sorry for the long rant but I feel strongly about issues relating to all kinds of discrimination which are based on human perception which itself is flawed and questionable...
As Einstein said :
"Two things are infinite: the universe and human stupidity; and I’m not sure about the universe!"

take care,

Kmarie said...

I LOVED your long rant!!! (and it wasn't that long at that either:) I ADORE it when people get passionate and commune on this space. You added a lot to this conversation! Thank you. I enthusiastically applaud your made me think too and it is absolutely bang on!
Lol I love Einstein and that quote is one of the best:) Thanks so much for sharing. I hope many read your comment that stop by here:)

Anonymous said...

This is a WONDERFUL post! You're so articulate and such a great advocate. I know I've been noticeably absent from the blogosphere (and even Facebook) during Autism Awareness/Acceptance Month...there are several reasons for this...I think it's largely because writing has become more difficult for me recently and also just because I'm weary. I'm weary of fighting for acceptance. I'm tired of the negative rhetoric from people who are combating us. I'm tired of the ignorance and the assumptions. So I've kind of hidden myself away this month and just kind of ignored most of it, even the good things, simply because I'm just so worn down with it all. I was so vocal last April, but I think that was partly because Autism stuff was my current obsession, and it's not speaking up has become more of a struggle. Anyway, I know that stepping away was in my best interests, but I'm glad that you didn't step away, and I'm glad you wrote and are sharing this awesome post.

Kmarie said...

Thanks Rae! I really don't think I would keep advocating if I was without kids on the Autism scale. It's too hard just for myself and it gets too depressing. I felt exactly as you...But the reason I keep going is my kids future and maybe even my grandkids. I dust myself off with the negativity, have a few tears and sleepless nights and then think of the darling children I have, and I decide to engage again. Sigh. It's definitely not just for me. I get so weary. Sometimes I wish people would just advocate for me..So I understand:) Sometimes we need a break. It's ok that you needed space and were weary to fight...I'll fight for you...because you certainly have fought for me in the past and will again. I understand weary. Sometimes I feel perpetually wearing when it comes to explaining or furthering understanding. It's very weighty.

Unknown said...

What a beautiful post and expression of the beauty to be found in just being YOU. I didn't post throughout April on my blog because all the negative stereotyping was way too overwhelming for me to deal with.

It's worth fighting for - acceptance - but it sure seems like a hard battle when you turn around and read some of the other parenting autism posts out there.

In my house, I'm the only one who isn't diagnosed autistic. My husband and three guys are absolutely awesome and I wouldn't have them any other way. Would I love to help them deal with a world that doesn't understand them? Help them understand how to deal with the overwhelming parts of the world around? Yes! But change them? NEVER!

Beautiful post!

Kmarie said...

Thank you Katrina! i am glad it spoke to you. It is VERY overwhelming! It's so ironic that Autism month is often the worst month for actual Autistics!
Yes, it's really hard.
I love that you adore your family and want to help them but not change them! We need more people like you in this world!
I appreciate you leaving your voice on this space and adding beauty!
Have a lovely day.

CalledtoQuestion said...

Great advocating, sweetheart.

It is truly frustrating when others try to inspire parents or doctors to cure autism, too fix it or even too eradicate it. That type of thinking seem so ignorant, like they hold the standard norm that all others should conform to. Blah!

Thanks for advocating! I am proud of you.

Kmarie said...

Thanks honey. It's easy to feel defeated at times...yup as you know that mentality is WAY to prevalent in the Autistic help community. It's so frustrating.
Love you

My Little Warriors said...

Thank you for advocating and sharing and putting yourself out there for others to understand! Much love to you beautiful friend!

Kmarie said...

Thank you so much for supporting me K. Much love to you too:)

Anonymous said...

Sorry I missed the last blog until now - crazy life at the moment. I'm glad you're still out there advocating for understanding between different groups of people with different mindsets/ways of dealing with the world. Whatever we call them with labels. Through your hubby's meetings in your home, your blogs as individuals, your lifestyle you're showing the world how it can take steps to heal itself.
Well done!
Happy Spring/Summer! Hope to talk sometime soon, when all the craziness settles - when that will be I don't know.
:) :(

Full Spectrum Mama said...

I love the way you start out general and get specific! In other words, you make your points in the abstract AND the personal. Very strong.

Kmarie said...

Spring is crazy esp in canada when we only have a small window of time to get things done and enjoy...yes still out there advocating...thanks!:) I hope you are doing ok....yes we will have to catch up!

Full Spectrum mama:
Thanks! Ha I did not even realize I did that:) It tends to be how I am. I am glad you enjoyed it and thank you so much for stopping by! Wishing you much love today!