Tuesday, January 21, 2014

Acceptance Does Not Mean ...

Question: What would you change about your autistic child?

Parent A :"I accept my child for who he is, I wouldn't change a thing about him."

Parent B "You're in denial and must be lying. You think you're better than everyone else. There are challenges don't act like there aren't"

This conversation is extremely common in the autism community, it's one I have engaged in countless times. It's a conversation that in the early years of our autism journey caused me to be excluded from support communities because of some misconceptions. Somehow, it was assumed that since I accepted my child and didn't want to change him that:

1. I was in denial
2. I was lying and trying to make myself look good
3. My child was too "high functioning" for me to understand the struggles of others
4. I didn't have any challenges at all
5. I was judging other parents
6. I was against support

None of that is true.

Acceptance DOES NOT mean there are not challenges 

Accepting my child as the person he is means I also accept the challenges that come with parenting. It means I do not fault my child for being who he is and I don't make any challenges my child may face about me. It also means I do not wallow in sadness over the things he can not or has not done yet.

When I decided to become a parent, no one ever promised me a journey that lacked challenges. Maybe I had a head start on the game because I knew in reality it would not be all sunshine and rainbows. I'm not sure.

Do I deny that there are challenges when it comes to parenting an autistic child? Absolutely not. But, often times parents link the challenges they may face directly to their autistic children.This line of thinking translates into parents believing they must "fix" their autistic children to fit the world, which can be extremely damaging to the child. It is also a very unhealthy mindset for any parent to be in.

I recognized early on that most of the challenges/fears/struggles I have had as a parent were not because of autism or my child. It was because of the ignorance and lack of acceptance in society. My child was not the problem.
Graphic courtesy of PACLA  https://www.facebook.com/ParentingAutisticChildrenWithLoveAcceptance

We live in a society that measures your value or worth by how well you can comply and blend in with everyone else. It is completely baffling to me that we are expected to raise our kids to be compliant, but as they reach adulthood messages of "be yourself" and "don't let anyone change you" become center of many of our conversations.

That logic simply does.not.compute.Why is it not okay to raise our children to be confident and secure with exactly who they are from the very start? Why does society insist we change our children and try to patch up the damage later? Is it because compliant children are easier for adults to manage? I think that may be the case.

Acceptance DOES NOT mean no support.

Every human being on this planet needs support at one point or another in their journey, some need it more than others. I have sought out my fair share of support over the years, and also given my fair share of advice. I believe supporting parents of autistic children is an extremely important factor in the outcome for the child, but I never let my need for support trump my own child's right to privacy and respect. I kept it small and discreet.

I didn't spill my son's most intimate moments to online support groups with 1,000's of members nor did I blog about it in public spaces because I respected my son's right to privacy. I also know I would be devastated if anyone did that to me. I am also autistic and have had some not-so-great moments myself. I understand how embarrassing it would be if someone exposed some of my most intimate experiences publicly without my consent.

During the years that I took on the school system and fought with my every fiber to not have my son's rights violated I had the support of a wonderful friend and advocate. I couldn't tell you how many times she picked me up when I was a mess of sobs. Watching my child suffer because others were ignorant hurt me so much. No mother likes to watch her child struggle.

She was there through my breakdowns. She listened to me cry and vent. She also gave me options, solutions, and empowered me. So when I was done crying I was able to stand up and say "Hell no, I will not back down". That is support. There were even times she had to tell me I was wrong about some things, and she did it because she cared about the outcome for my son. That is also support.

Constantly commiserating, listing negatives, comparing your children to others, having pissing contests about who has it worse, always talking about how hard it is and never accepting solutions is NOT support. If I were to entertain this type of behavior I would be enabling you to continue on an unhealthy path. It is simply not healthy for you or for your child to be in this mindset.

Acceptance DOES NOT mean not improving

Another myth about autism acceptance is that we are against helping our children improve because we disagree with highly intensive therapies that take away from the childhood experience.

What those of us that accept our children have come to understand is autistic children and people have their very own developmental timeline to follow. We respect and understand that it's very important to allow our children to meet milestones in their own time and not by some developmental chart a professional made up.

We also understand that just because our children can't do something now, doesn't mean they will not ever do it. Autistic people grow and develop just like every human does, just in their own time. My son is nearly 16 and I promise you he is nothing like he was at 4 years old.  I am 34 and am nothing like I was at 4 years old either. We both grew and matured, in our own time.
Graphic courtesy of PACLA  https://www.facebook.com/ParentingAutisticChildrenWithLoveAcceptance

I think professionals scare a lot of parents into therapies by telling them if they don't do XYZ therapy now they will miss the "window of opportunity" for their child to be successful. That's simply not true.

20 to 40 hours a week of intense therapies and schooling for years in order to get a child "table ready"or make them "indistinguishable from their peers" is not allowing a child to enjoy their childhood. That is not teaching them to accept who they are. It is sending the message to them that there is something wrong with them.

If you believe that your child is not smart enough to understand that all his time is spent focused on "fixing" him while other children are out playing and having fun, you are not presuming competence in your child.  My grandmother use to say "Children are little not stupid".

Acceptance DOES NOT mean I don't want to support you

Another common misconception about those of us that accept our children is that we don't want to offer support. This is a big one.

I DO want to support you. I want to share this wonderful way I have of approaching the world and viewing my child with you. I want to GIVE that to you. I want to EMPOWER you. I want to give you HOPE! I want to listen to your struggles and help you sort through them. I will lend you my shoulder if you need it and extend my hand if you need helping getting back up.

There are limitations on my support though. I will not offer you support if you are violating your child's right to privacy or dehumanizing him. I will not allow you to constantly complain and get "stuck" on the negatives while never taking any solutions.

I will not stand for you speaking of your child in ill ways.I will not entertain you with comparing functioning, co-morbids, therapies, doctors, and challenges. I refuse to listen to how you wish your child was someone totally different than who he was born to be (example: I hate autism, if I could make him normal I would, and any cure/fix/recover talk)

The autism acceptance community has so much to offer parents, we have a need to help you make a better future for your child. We are a large and diverse community made up of autistic adults, parents to autistic children, autistic adults who are not parents and professionals that are allies to our community.

We want to help.

Saturday, January 4, 2014

Return to Sender

Houston we have a problem! 

 "Are disability advocates working together WITH parents to create change for people and children with disabilities? Recently, I've found many examples of disability advocates using their voice to promote a self-narcissistic view of their disability, while ridiculing parents and accusing them of neglect and abuse." 
 "The discrimination and bigotry against parents must stop if we want people with disabilities to be respected and regarded as a resource and vessel for change."

First issue : Tone Policing 

I’ve been in this community for quite a long while and statements like the one above are not uncommon. It resonates from the general direction of parents raising autistic kids who simply do not like to be told they are wrong. These are parents who are not disabled, have no idea what it’s like to be autistic and typically are looking to "make normal" or "cure" their children. 
I have been on the receiving end of such a message, many times. 

In fact, I was on the receiving end of it enough that I began to believe they were right and I was doing this advocacy thing all wrong. I've been told “You make me feel guilty” more times than I can count. I have heard I needed to show more respect, because, you know, I haven’t walked in their shoes. (which is funny because I am a parent to an autistic child too)
I decided to work on changing my approach, thinking that maybe the problem WAS me. Maybe, I was not being heard or accepted because I was simply too harsh. Maybe I did come across as attacking, bigoted and even narcissistic. Maybe I was simply too rude and insensitive to be heard. Maybe, JUST maybe, they knew something I did not. 

I really wanted to help other people and I was desperate to have them listen to me, for their kid's sake.
I did everything I could to nurture the parents before moving on to the real issues, which by the way takes a lot of mental energy to do.. It didn't really change much, What ended up happening was they would take the  sympathy I offered, and leave the real message I was attempting to send behind. Or they would take my sympathy and tell me the rest of the message I was sending:
Made them feel guilty.
I was still being told I was rude, cold, and insensitive
I was being disrespectful.
I was being too critical.
Even though I had changed my approach the same message was still being sent:
“I don’t have to listen to you because you make me feel guilty. Your concerns are invalid. I don’t like being told that maybe I am wrong. I am the parent, the nondisabled person and I know what’s best for disabled people. I matter more, so sit down and shut up.”
So, the problem was not me or my approach, it was their “it’s all about me” complex. It didn’t matter what box I packed and delivered my message in, these people were going to write “Return to Sender” on it every.single.time.  I was dealing with martyrs and pity parties, and I was crashing their party. 

They never wanted my perspective, solutions, or respect… they wanted me to be compliant, They wanted me to just shut up.
Image Description:
 Cardboard Box taped shut. Stamped on the box are the words Fail, Return to sender, Rejected and Damaged

Second Issue: Claims of bigotry and discrimination 

Let’s get something out of the way here.
Q: Are autistic people capable of bigotry and discrimination?
A: Well, yes of course, all humans are capable of this.
But, the context that surrounds these claims does not dictate discrimination and bigotry. Speaking up for yourself, asking for respect and demanding equality are not forms of discrimination. Pointing out harmful methods or patterns of behaviors in which parents engage with their autistic children is not bigotry or hate.
More times than not, claims that parents are being bullied by autistic adults are sent out because parents are simply uncomfortable with the facts. Autistic adults in these scenarios refuse to subscribe to the status quo (or status woe as some have coined it).  This often leads to parents claiming they are being bullied. 
Parents and nonautistic people fail to understand that autistic people have long been on the receiving end of hateful rhetoric and silencing of their voices in what is supposed to be their very own civil rights movement.

Imagine your whole life being surrounded by people who silence your voice and invalidate your concerns. Suppose you were forced to live in a world where you had to listen to how devastating it is that you even exist because you are just so “puzzling” and extremely hard to loveCan you even begin to fathom how it feels to constantly stifle your emotions, feelings and words because “it’s just not fair" and your thoughts and feelings "make others guilty.” 
What if you had to exist in a world that believes in compassion towards murderers, attempted murderers, and abusers of people just.like.you ? This world even goes as far to say that these acts against your humanity are justifiable because they couldn't put enough “pieces” together… walk in their shoes why don’t ya? (forget about your shoes, you don’t even OWN a pair). 

So, if you had to live  in a world where your very being was considered a burden and you were viewed less than human, you’d be a little pissy from time to time too.

The autistic community, which includes autistic parents, autistic adults without children and their allies engage in these hard to have conversations because we care. There is no agenda, other than to help make the world a safe place for all autistic people to exist.

Sometimes the package our message is delivered in may not be very appealing to some. But if you take time to open it up,you'll discover some pretty awesome stuff inside.

Image Description: Opened cardboard box
inside of it to the left are 3 cartoon hearts
In the middle is another box brightly wrapped in red paper with a yellow bow
To the right is a cartoon bouquet of flowers
Text at the top reads :Surprise in big red text