According to Autism Speaks, it is Autism Awareness Month.

I’m not excited about that.

I’m not excited about empty gestures like “lighting it up blue.”

I’m not excited about perpetuating the negative stereotypes about Autism that are already too prevalent.

I’m not excited about pumping more money into a corrupt organization, Autism Speaks, which will ignore the need for funding of supports and accommodations that Autistic people desperately need in favor of funding things like:

• teaching people to fear Autistic people
• ignoring and silencing the voices of Autistic adults
• eradicating Autistic people through eugenics
• exorbitant salaries and perks for high level Autism Speaks executives
• perpetuating negative rhetoric about Autism
• turning Autistic children into burdens that parents must tragically bear
• insulting, humiliating, shaming, and otherwise degrading Autistic people

I am excited about a movement lead by Autistic Adults which promotes Autism Acceptance.

I encourage anyone reading this to support those efforts.

Granted, they are not as sexy and splashy as lighting the world up blue under the guise of doing something good.

Certainly, this movement will not receive nearly the media coverage that the one sponsored by Autism Speaks will.

But you can feel good about not lining the pockets of the “Autism for profit” people over at Autism Speaks.

You can feel good about learning how to accept and best accommodate Autistic people.

You can feel good about doing something that will actually make a difference in the lives of Autistic people.

You can feel good about making the world a better place for people like Evie.  People who need to be heard over the loud, well funded, fear mongering racket being pumped out by the Autism demonizing machine.

I hope that you will join me in drowning out the Autism Speaks hype and listen to the Autistics speak.

Maxine, last night I made a parenting mistake with you.  I don’t know what I was thinking.  I invited you to a private slumber party–you and mama.  You were excited all day.

When night rolled around, we popped corn in the air popper and brought it upstairs to watch a movie.  Daddy put “Ratatouille” on for us and left.  I should have previewed it.  Actually, I should have thought of something else for us to do together.  I’m sorry.

We were only a few minutes in and things spiraled out of control.  The lady in the movie took out a gun and all of the rats scattered.  The main character, rat, was separated from his friends.

Tears immediately sprang from your beautiful eyes.  I quickly turned the movie off.

“Mama, where are the rat’s friends?”

“Mama, what was the lady doing with that air blower thing?”  (you don’t know what a gun is)

I tried to answer calmly.

“Mama, I don’t like that.”

“I don’t either love bucket.  Do you want to talk about it?”

“Mama, I was really scared.  The rat lost his friends.”

“I understand that you’re scared about it Maxine.  It is pretend.  And I bet the rat finds his friends.”

“Mama, I’m scared.  What are you going to say about that?”

Indeed, my love.  What am I going to say about that?  About love and loss?  About all of the things I work so hard to keep from you…and then fuck that all up with five minutes from one movie?  What am I going to say about the things that I don’t want you to know but that you will, inevitably, know–no matter how hard I try to shelter you from the harsh edges of a world that is supposed to be round.

“Maxine, I think there is a happy ending.  The rat finds his friends.  I’m sorry it scared you.”

I’m sorry I stole some of your innocence by showing your a freaking Disney movie.  What was I thinking?

“Mama, how do you know it is pretend?”

“Because the things you see on TV are pretend.  We know that real animals don’t talk like people.  Mae Mae doesn’t talk like people.  Winston doesn’t talk like people.”

“Mama, Grumpy doesn’t talk anymore.  Remember when he didn’t die?”

Fuck.  You are  making the connection between the fricking air blower, that nasty lady, the rats’ peril and your grandfather’s death.  I’ve worked so hard to make death not scary for you right now because you are just not ready to wrestle with it.  Really, is anyone?

“Grumpy doesn’t talk the same way.  But he still talks.  He talks in your heart.  I know he is telling you that he loves you.  Can you hear him?”

“Mama, why did the rat’s friends leave?”

“It was a mistake honey.  They were all in a hurry.  They will find each other again.”

“I don’t like when you leave me downstairs and go up to check the laundry.”

“I will always come back to you, Maxine.  I love you.”

“Can I know the reason?”

“The reason that I will always come back or the reason that I love you?”

“That you love me.”

“I love you because you’re you.  I love you because you’re awesome.  I love you because you’re my daughter.  I love you because you are kind.  I love you because you are a goofball.  I love you because you make mistakes and do some really good learning from them.  I love you because you’re thoughtful.  I love you because you are so easy to love.  I love you to infinity.”

“Mama, how do we turn the slumber party off?”

Fricking electronic age.

“We don’t have to turn it off honey.  We just stop having it.  We can cuddle and nurse and talk.”

“I don’t like that movie, mama”

“I don’t either.  I’m sorry I showed it to you.  We won’t ever watch it again.”

Sometimes people think I get caught up in little details and miss the big picture.

I say the little details make the big picture.

When it comes to Autism…so much gets lost in the little details that we brush aside, judge as not important to the big picture or trivial.  I get picky about language and about being positive about the person.

One of my biggest sticking points is this whole notion that parents should grieve when their child is diagnosed with Autism.  That it is normal to grieve the Autism.  That it is necessary.  That it is right.

It freaking isn’t!

I think nurturing those thoughts is dangerous to both Autistic people and to parents.  I get a lot of push back when I suggest that grieving Autism is not okay.  To me it is akin to grieving the color of your child’s hair, grieving a lack of athletic prowess, grieving any number of things that are just not okay to grieve.

Grieving an Autistic child is telling the world that this child is not what you wanted.  Grieving that you don’t have the normal child that you were expecting.  That is very different than feeling unsure how to parent effectively.  That is very different than being angry or scared that our society does not accommodate disabled people well.

I really loved Brenda Rothman’s piece, “Autism is Not a Parenting Fail.”  Instead of teaching parents to fear and dread the tragedy of Autism, teaching them that it is equivalent to mourning the death of a child with our language, we need to put on a new pair of glasses and look at Autism through a different lens.  My favorite part of Brenda’s article is this passage:

“You’ve done nothing wrong. You didn’t cause this. You haven’t failed your child. You were given an instruction manual for a Ford and your child is a Ferrari. So, congratulations! Your child is NOT fundamentally different from other children. You just need the right instruction manual. Parenting your child will be more intense. You’ll need more patience and time. Your child will have intense emotions and needs. But he’ll also have intense curiosity, drive, determination, desire, persistence and individuality. What you’ll need to find is the right fuel, the right environment and the right supports. With those, your child has great potential. With the right supports, he will have a happy and fulfilling life.”

This is the message that we need to be out there.  This is what is good for Autistic people.  This is what is good for parents of Autistic people.  If as parents we are grieving, what does that tell the world about our kids?  About Autistic adults?

We cannot afford to overlook the language that we use when we speak about Autism.  We cannot afford for the focus of Autism be about parental grief.   Our anger and our sadness and our grief need to be directed at the targets which are worthy of it.  Those targets should be the ways that Autistic people are disabled by their environments.  And we need to attack those targets with ferocity.  To disable the environments which keep Autistic people from thriving.

Disable to enable.  Maybe that looks like keeping strobe lights out of an environment–flashing lights cause my daughter to have seizures.  Maybe that looks like equipping kids with fidgets or bubble wrap in Evie’s case.  Maybe some people need noise dampening headphones or even better–turning down the volume in the environment.  Whatever.  Focus on the barriers to ability that we can knock down.  And that is pretty much all of them.

Can we please stop talking about how tragic Autism is for parents?  How tragic it is for people who are Autistic?  Honestly, it is insulting and offensive.  And if you cannot accept your child, unconditionally, without a grieving process for his neurology, hair color, or freckles, then I say you are unworthy of parenthood and unworthy of your freaking awesome kid.

Your kid is Autistic.  Get over it.  And stop disabling him/her further with your language and grief.

***Editing to ad this excellent essay suggested in the comments, “Don’t Mourn for Us” as it says it far better than I have here.  Thanks to “The Caffeinated Autistic” for suggesting it.  Her blog is wonderful and worth a read as well.***

I have been trying to decide what to share with regard to my observation day at Evie’s school.  I’ve decided to post my email to school because I am interested in sharing our journey with the community–possibly saving another child some of the pains that I believe that Evie has suffered.  As a parent, there is a vicious learning curve and maybe my fumbles will serve as lessons/warnings to other parents.  I am interested in holding the school accountable both to Evie and to the community.  But really, selfishly, I am most interested in saving my daughter pain and sharing on my blog has been eye opening and door opening.  So that’s what I am doing…here is my email:

Thank you for letting me share the day, on Thursday, with Evie.  I know that it is difficult to have someone watching while one does her job.  I also realize that my presence was disruptive of Evie’s day.  I wanted to share my observations with you.

I really like how Evie’s day is structured.  I am very happy with each segment as I think all of them have value and are on par with the goals that we have been discussing.  I was particularly pleased with what I saw during speech with S.  Specifically, I like how S made adaptions, on the fly, based on how Evie was reacting–like recognizing that Evie was focused on having the DVD taken away and allowing her to keep it longer so that she would be more receptive to the picture exchange. 

Additionally, I am over the moon with both of Evie’s paraeducators.  I have always been pleased with S.  MK is also excellent with Evie.  They both have a demeanor which is very suited to Evie.  Please pass along my compliments and appreciation of the wonderful job that they do with Evie.

I am very impressed with the independence that Evie is exhibiting at school–pulling her backpack, carrying her lunch sack, selecting her own snack from her bag, and selecting her milk. I was also happy to see how well Evie is eating using utensils at lunch with S.  This is very good progress and I see that I need to have higher expectations of her at home with regard to eating and independence.
I also like that Evie seems to be attending to her visual schedule, somewhat.

I couldn’t believe that Evie sat for the entire story time with her class after recess–and that she seemed to enjoy it.  Evie stood in line with her classmates after recess as well–which MK said she doesn’t normally do.  I would like to see her work towards doing this on a regular basis.  I also would like to suggest that the bathroom time immediately following recess be eliminated/moved so that Evie can stand in line and then attend the full story time with her classmates as tolerated.

There were several things that are of great concern to me. The first being, as I emailed M, that Evie was not offered a single ounce of water the entire day.  She did have milk with lunch which she did not touch.  This is, certainly, not a new concern for me as we have discussed it quite a bit in the past–where I said that water needs to be available to her at all times.  When I had to pick Evie up last week when she was sobbing all day, I emailed M after and let her know that Evie guzzled water when she got home–sharing my concern that thirst/dehydration may have been playing a role in her discontent.  Evie was truly happy once she was out of school.  M  had emailed that next time she would make sure water was offered.  

Not giving Evie access to water endangers her health.  Further, it is not good for her mood. I am really upset that I have to continue to reiterate the importance of water being offered to her as this is a basic human need.  In the afternoon when Evie was washing her hands, she was trying to drink from the faucet and MK was telling her not to drink that water.  However, she was not offered water even upon exhibiting obvious signs of thirst. 

This is an extreme example of what I mean when I say that it is dangerous to label all of Evie’s negative reactions as protestation behaviors.  Her very basic needs are not being met.  Being thirsty can affect her mood, her stamina, and her ability/willingness to participate in her education.  We need to fully understand why Evie is flopping before we assume it is a behavior.  Until Evie’s communication needs are being met, I am even less willing to have anyone make assumptions after seeing what I did with the water.

Another example is that I observed Evie batting at her head and fussing.  When I looked at her scalp, she had a psoriasis patch which was obviously really uncomfortable.  I don’t expect staff to pick up on every single nuance with Evie that I do as her mother, but again, the assumption cannot be made that she is simply protesting when she may have a physical ailment that is affecting her.  And again, until Evie’s communication needs are met, this is going to be impossible to know.

The Evie that I saw at school Thursday was nothing like the child that I see at home.  Certainly I realize that my presence played a  role in that.  I also realize that I have less demands on Evie at home.  However, the way that I deal with “flops” is far more effective.  I understand that J feels that ignoring flops is reinforcing to Evie’s “behavior.”  I whole heartedly disagree. At home, Evie flops very infrequently, maybe once or twice a week at most.  And they never turn into the all out meltdowns that I saw at school.  They last seconds.  I consider her flops to be communication and her only way to let us know when something doesn’t feel good or that she is frustrated.  Until her communication needs are met, it is unfair and it is dangerous to assume otherwise.  

The way that I saw flops dealt with are still not consistent with what I have asked to have happen.  When I saw them at school, there was, immediately, a hand right in her face. I had intended to keep my comments to myself, but I did share with both S and MK that they should take a step back, wait until Evie calmed down a bit, and then offer a hand from the step back, not in her immediate body space.  I can see that what I observed is an ingrained habit as even after my suggestion, it was their automatic response.  I am not blaming them for this but I am insisting that this change.

I observed that the hand in the face was too quick and too invasive.  As soon as it appeared, Evie became more frustrated. If what J says is true, that not immediately reacting is serving to reinforce, then I believe that we would see more frequent and intense flops at home than we do at school.  From my observation and from the flop journal, I see that the reverse is true.  I think we can all agree that it is best for Evie to come to the decision on her own that it is her only option to rise–sit there or get up.  From our experience at home, she always does come to that conclusion quickly.

J had mentioned at our last meeting that Evie, sometimes, becomes aggressive when she flops–biting at people’s legs, etc.  Evie never does this at home.  This tells me that the way that school is approaching flops is not effective and very frustrating for her as she is not by nature an aggressive child.

The other thing that I noticed was that Evie would put her hand in her mouth and have it quickly removed by paraeducators and M.  M said the reason was that it gets messy.  I recognized that she did this when she was frustrated and that it was a coping mechanism.  I do not want her coping mechanisms, which are safe, to be thwarted. I can send in some hand sanitizer if this is a concern. In my research, I have learned that many adults utilize chew fidgets instead of their hands.  I can purchase and send some in for Evie.

There are several things that I would like to recommend to help Evie. One is that she be given access to bubbly wrap or something crinkly to help mitigate frustration and to ease transitions.  I think it will help to soothe her and could make her more available for learning.  I realize that  we don’t want whatever she has to be distracting, but we do want her calm and I think this might help.  I also think the use of holding hands would be effective both in preventing flops and establishing relationships.  At present time Evie communicates a lot with her hands–she uses hand holding to both guide and be guided.  Since this is her only form of communication at this time, I would like to see us maximize the use and would like to discuss this in greater detail. I think the RDI is a great idea–I think incorporating some physical play would be effective.  We can also discuss this at a future date.

When I was observing Evie, I was alarmed to hear a staff person say to child, “Child, are you going to have that same haircut for your whole life?”  I am not misunderstanding what she said because she repeated to J as J thought the question was directed at her, not Child.  I found this to be incredibly inappropriate and possibly reflective of a climate where children are not, in general, respected–given the fact that this was said freely, twice, while a parent was in the room. It leaves me to wonder what kind of things are said when there aren’t parents in the room and I am gravely concerned by these thoughts. I told Child‘s mother,  what I heard because I would want to know and because I believe that the responsibility belongs to everyone to guard against bullying by children and adults alike–especially where vulnerable people are concerned.

Through my research about Autism, it has come to my attention that many adults are emotionally scarred by experiences where they were where subjected therapies that demanded quiet hands, eye contact, and cessation of self-stimulatory behavior.  I recently read a book, which I would be happy to loan to anyone that might be interested reading it, called “Loud Hands.”  It is a collection of essays which include discussions on what these types of therapies.  As such, I was taken aback by the many posters I saw in the school about “Whole Body Listening.”  Having  developed awareness about these experiences, I know that I don‘t want Evie to be subjected to the same approaches and encourage the school to consider that these approaches may be detrimental to Autistic people.

Evie has impairments that are co-occurring with her neurology.  She is also, very much, disabled by her environment.  I want to reiterate that she needs appropriate supports with gaining skills that respect her as an individual, help her to cope with her environment, and achieve the ability to communicate.  Evie is an individual and needs to be treated as such.  There is no one size fits all approach to helping her achieve her goals.  What has been employed. thus far, has achieved limited progress. We need a different approach and I insist that this approach not be disrespectful or rigid.
Approaches to working with Evie’s behavior and reactions should not ignore the underlying motivations, demand robotic response, be aversive or teach automatic compliance.

I am not alone in my thinking.  DIR/Floortime is a widely accepted therapy which is far more respectful of individuals. I was very happy to hear that J has training in this model becuase I find that much of what is said resonates with me and that I think that parts of it could be used successfully with Evie–this article has information which I find particularly valuable. http://www.communityresourcesforautism.org/matriarch/documents/Floortime%20Information%20Packet.pdf

I feel like my input is unwelcome and resented often.  I am certainly not an expert on Autism.  But I am the best expert on Evie. It feels like there is a reluctance to depart from the approaches that have been mostly unsuccessful thus far.  I feel the lack of success is due to the fact that Evie’s needs as an individual are disregarded in favor of adhering to rigid practices.  In my reading, I have encountered many experts that say that not every type of intervention is for every student and that individual differences need to be considered first.

If you’ve gotten to the end of this, I am impressed 🙂  Thank you.
Beth