On the Sad End to the Search for Mikaela Lynch

The body of Mikaela Lynch, age 9, Autistic, was found in a nearby lake where she apparently drowned. I am sorry to say that when I saw the red flags of a nonspeaking missing child, a nearby body of water, and unfenced backyard leading to woods, I feared the worst while praying for the best.

I have asked my Congresswoman to consider expanding the Maryland Silver Alert system to include missing Autistic children, who are not covered by the Amber Alert System. Please join me in this effort in your States as well.

I'm going to comment on the article in the Cafe Mom's The Stir because I don't wish to increase hits on the Examiner article which vilified the parents without a clear grasp of what happened that day. We weren't there. We don't know what happened. We only know what is reported to us. I will wait for the police to finish their autopsy and investigation, and pass on my sincere condolences to Mikaela's family.

In 2012, I asked the Maryland Autism Commission to recommend survival swimming be part of the educational curricula for all Autistic children and adults because the numbers of first time wanderers with developmental disability who die by drowning is frighteningly high. Unfortunately the Commission wasn't able to include this in their final draft.

We have been engaged in teaching our son water survival rather than swimming since his school reported him missing and he was found by chance in February of 2010. He was found near a backyard pond, according to his principal's account of events on the phone. We will never know what happened that day.

But there is a much more critical issue here, a dangerous slope we as parent advocates can easily slide down in our fear that our children might be next, and that we might be scrutinized for parental negligence. Let us not fall into the trap of calling for a behavioral code for wandering, and imprisoning our children in the name of protecting them from harm. Instead it is critical that the billions of dollars being allotted to brain research include funding set aside to understand the causes of wandering, and search for solutions that don't imprison our children and try every parent who will spend the rest of their life second guessing the last day of a wandering autistic child's life for neglect in the court of public opinion.

In my own research on wandering, there were cases of drowning in which the victims were wearing tracking devices linked to police emergency centers. This issue was a matter of public outrage in Colorado in the cases of the drowning of Kristina Vlassenko and the wandering incident of Brandon Wells, who was fortunately found despite the failure of his tracking device. In addition, Brandon's mother was later brought up on charges for the device's failure to hold a battery charge.

It is saddest to me that we tend to forget that all children do deadly things daily. When I was growing up, parents were warned about keeping all children away from old refrigerators. Each year typical children fall in bodies of water and drown. They swim in areas of riptides and are carried away. Children who are capable of reading ignore warnings and fall through ice on frozen lakes. When other developmentally disabled children or typical children are the victims of horrible accidents, the parents are allowed to grieve and media coverage occurs in a humane fashion. Nor does anyone lay blame on the pathology of the children. Two things have to end here. One, we have to see our children as people with degrees of impairments that need to be addressed and managed; NOT as medical nightmares who need to be behaviorally controlled but as people who need accommodation and supports for such potentially catastrophic events. Accommodation must be made so that solutions account for autistic people running from abusive placements in both school and institutional settings.

I made the effort to write this in extreme pain because I don't want us to go down that path where we imprison our children in the name of protecting them. It is our job to empower our children and teach them to survive. It is the difference between surviving 15 hours in water by shouting "to infinity and beyond"  and locking your child in a cage to keep the child "safe".

Mother's Day

Today finds me going back to why I felt the need to write a blog in the first place, and where I want to take the blog from here. It is sometimes a good thing to hit the brakes on what I'm doing, look to see where I am going and decide if I really am in such a hurry to get there.

My original purpose in writing this blog was to have a body of work for my son and my immediate family. This body of work was to be a clear statement of how I felt about my son being autistic. It was to make it apparent how much I loved him.  It was meant as a vehicle for everyone to know my wish that he be as autonomous as he is capable of being.  This body of work should make it clear to any reader:

• Our son is loved unconditionally. He is not loved despite his autism diagnosis.
• I have faith in our son and presume he is competent even when others do not.
• Whatever advocacy work I do is done to gain acceptance, inclusion, and accommodation for our son and those like him.
• That my purpose is to stand by my son and not have anything I do, including advocacy, overshadow that critical purpose.

This blog was to be proof of how proud I am to be his mother, and what an amazing person I believe he is. Mustafa has great creativity, determination, and strength of purpose. These qualities are laudable in any human being, but in him they are opening the way for him to succeed in a world where he is seen as less than the least of God's children, because he is a minority even among his peers. So as he fights for mastery over his environment, it is my task as his mother to fight for a rightful place in society for him.

I decided to set the direction of The Autism Wars blogs back on that course. To that end, I am choosing topics I think are important to him, and people I think are role models for him and examples of what we all can be as advocates ourselves.

 Today I decided to talk about people who fit that criteria; those who quietly wage war against great odds for neurodiverse adults and children, and continue to speak out and fight for all people on the autism spectrum while seeking justice for their own children and loved ones. Since it is Mother's Day, let's start this new journey with two amazing Autism Moms who don't blog.

Andre McCollins and Mom Cheryl in happier times

Cheryl McCollins fought for 10 years to have the video of her son Andre’s torture at the Judge Rotenberg Center released to the press. She continues to fight to close the ‘school’. Cheryl sued the JRC for the funding Andre will need for his care the rest of his life. Andre has never recovered. Cheryl joined protesters outside the JRC and continues to use her voice to speak out against JRC and the torture of young Autistic people in the name of discipline. Cheryl even created a petition on Change.org asking for support in demanding the State of New York cease sending students to this center.

Emily Holcomb and Mom Jenny Parker Holcomb,
photo courtesy of the Holcomb Family

Jenny Parker Holcomb was completing an IEP meeting for her daughter Emily when the sheriff's department appeared with a police complaint against her daughter, accusing Emily of slapping a teacher . Jenny had to explain that Emily was on the profound ray of the autism spectrum, nonspeaking, with intellectual disability. mily had been so mistreated at her school placement that at one point she was restrained for 55 minutes by staff. With the help of special education attorney, activist, and father of a child with autism James Gallini, Jenny began the fight for Emily's future. Lydia Brown, who read about Emily's situation on Landon Bryce's ThAutcast blog, offered to write a petition on Change.org and that petition began a social media crisis that no one was prepared for. Assault charges against Emily were dropped. Emily has since thrived in an appropriate educational placement and community activities that give her the life skills training she needs to transition to adulthood and autonomy. Jenny realized from Emily's own horrific experience that this should never happen to anyone else. She has since led parent support groups and online action groups, empowering other parents to stand with their children and take on whoever abuses them.

Happy Mother's Day

This is the first segment in a series on people who need to be recognized for the work they continue to do for the betterment of the autism community.

Note: James Gallini, Landon Bryce, Emily Titon, Shain Neumeir are names you should know. They play very important roles in these stories, as you'll see later.

The Autism Wars Amplifies Autistic Voices

The Autism Wars is hosting writers, poets, artists, photographers, actors, and musicians who are neurodiverse.  Our Facebook page will feature giveaways of their works. We are doing so in the spirit of continuing the theme of Autism Acceptance Month (celebrated this past month for more information click  here, here, and here). We hope by sharing these great talents from our community with you we will foster the principles of Paula Durbin-Westby's  International Autism Acceptance Decade, 2010-2020.  So we are very excited about our first author and activist, Amy Sequenzia. In her own words:

Amy in her creative element

I am a non-speaking autistic activist, writer and poet. I also have epilepsy and mild cerebral palsy
In 2012 I became part of the Board of Directors of Florida Alliance for Assistive Services and Technology (FAAST). I was a presenter at the conference “Reclaiming our Bodies and Minds” at Ryerson University in Toronto and at the “Hear Our Voices”, CARD Conference in Orlando, FL.
My essays have been published in blogs and websites: The Thinking Person’s Guide to Autism, The Shift Journal, Think Inclusive, Autism Now Center, The Autistic Self Advocacy Network (ASAN), Autism Acceptance and Spectrum – the film.

Some of my works are part of an anthology published by the Autistic Self-Advocacy Network (ASAN): “Loud Hands – Autistic People, Speaking”
Some of my poems are part of a Poetry Anthology published by the Community Access to the Arts


I blog for Ollibean and The Autism Women’s Network

I have published three small books of poetry.

I like having my voice heard and I try to be a good advocate for my community

Her beautiful book of poetry is our first giveaway:

Photograph of the book My Voice: Autism, Life and Dreams by Amy Christine Sequenzia

So get your raffle on! Here's your chance to celebrate nonspeaking autistic talent and win:

a Rafflecopter giveaway

Two Standard Deviations from the Mean

"More. like. you.than.not!"

-Larry Bissonnette,  "Wretches & Jabberers"

I was in a meeting with my education services officer, academic adviser, and my psychology professor. The ESO started off right away. "We received your test results today." "We want to rework your academic goals for the remainder of your freshman year with us accordingly." All three men were staring at me strangely. I thought this was a very bad sign. 

The counselor mumbled "it's amazing". "What is going on?" I shouted, really disturbed by now. My psych professor said "You've tested over two standard deviations above the mean." "We think you should test out of your general educational requirements and take the 400 level psych courses we're offering next term." They went on to say I could handle an additional 3 semester hours a term with no issues. I expressed concern that I was trying to hold down a job and did not want to risk my scholarship and BASIC (what would later become Pell) Grant with a subsequent poor performance if I could not manage the additional course load. They were more confident about my ability to manage the added coursework than I was. I was approved to take Child Psychology and Animal Behavior, senior level psychology classes, the following semester. 

What I will never forget about that not so positive incident was the three men staring the entire time we spoke. I felt like a zoo exhibit throughout the interview. They stared as if they suddenly realized I was a creature from another solar system. 

I was 18. I learned a new, painful lesson; how people react emotionally when they learn a person is two standard deviations above typical intelligence.

Twenty eight years later I sat in a pediatric neurologist's office as he explained our son's comprehensive evaluation results to us in a flat, cold voice. All I could remember were groups of words slapping consciousness painfully:  global developmental delays, profound autism, intellectual disability so severe there was no measurable baseline. He threw out a rough estimate of mental age. I thought to myself, "he's saying my baby is at least two standard deviations below the mean." We were told there was nothing we could do. The future was grim for our son. Over two standard deviations from the mean. Now why was that familiar? In that moment, I couldn't catch the thought thread and reel in why it might be important. 

Mu's father is a brilliant man. The term genius has been used by those who know the minutiae of his creations. Not average. His intelligence has not been formally measured. We had plans for our son. Singapore Math courses, Montessori school, robot building. The day we got that diagnosis, after we stopped crying, we began thinking. Our joint ability to think and think well helped us push past this moment. We held hands and spoke together softly, saying we had to regroup. Now the plan was how our son would be able to manage on his own. The new question was how could someone two standard deviations below the intelligence mean command his own life? We approached that question as a series of engineering problems. We have been navigating and recalculating solution arrays on the fly ever since. 

The connecting thread of experience caught me years later after an incident that occurred while I was at the playground with my son. Someone said something awful about him, right to his face. I corrected them. I told them he understood exactly what they said. I did the "what is autism" speech. The child, much older than my son, apologized to me. "No," I said. "Apologize to him". A hesitant apology came. The playground had become an unwelcome place for us again. As I settled my boy in his wheelchair and turned us toward home, the silent, persistent staring followed and I felt that sense of vertigo that sometimes accompanies flashbacks.  

Realization came, and that thread of memory yanked itself to our moment on the playground. I was back in time looking at three men who had met me a lifetime ago, who spoke with relaxed ease to me when exchanging social pleasantries in the school halls. Looking at the way they changed when they held in their hands the knowledge that the same student they conversed with and encouraged was two standard deviations from the intelligence mean. And the looks were exactly the same. It was the same type of horrible, distancing stare. Like the child bully and her friends at the playground, staring as if my son could not be like them.

My son and I are equidistant from the mean in measured intelligence. We are both somewhere beyond two standard deviations from that mean. Neither of us is of mean/typical/average intelligence. We are both neurodiverse. That additional odd fact, when linked to all the knotted ties that bind me to our son, makes blaming him for being different impossible. He is not different. Not from the wrong planet. He is very much my son. 

True respect and acceptance means understanding that part of those unique characteristics that make our son diverse are from the same genetic soup that floated together to create us, his parents.

More.like.me.than.not

Until the Murders End

This is the last article I'll be posting for awhile. I've tried for over a year to write about this topic, but each time I've broken down. I decided to fight the sadness because I just don't have the time to continue to be silent on this. Tragedies keep happening. 

Time to explain the scrolling names at the top of my blog, and why I am listing murder victims and how they died. 

Someone commented recently that they didn't want to participate in the annual day of mourning for disabled murder victims. "I prefer to focus on happier, positive things", they said. Don't we all? But when we turn a blind eye to injustice it does not go away. It worsens, escalates. When people who consider themselves "good people" ignore injustice they enable it. Sometimes, you have to stand up for what is just, by reminding people infamy exists, and its victims are waiting to rest in peace. 

The murder of Autistic children by anyone has always upset me. I don't want to hear any excuses made for anyone who has committed such an act because my job as a special needs parent is not easy either. My son has a great degree of impairment and historically, little or no supports. He is, "like your child" if people must have that trope. I have enough respect for him as a person not to spend my life complaining about being his mom because I am one of the reasons he was born. I own my part in his coming into my life. He was, and is, a wanted and welcomed child. It is no fault of his own he nearly died on his first birthday from a deadly flu despite being vaccinated. His great challenges are not his fault. He is a heroic person. I could not be as patient, loving, or understanding as he continues to be despite the abuse he has suffered in two school placements by people who presume he is not human and is not worth their trouble. His daily perseverance in the face of overwhelming challenges to be independent is staggering. I am not half the person my son is. I am over 50 years old, and I have yet to meet someone like my son. 

So when someone takes someone like my son, a human being fighting for their own place in society, for the right to be counted as human, to be independent, to overcome their impairments, and snuffs out that light, it is as if I've been stabbed. It kills something in me. The grief is personal. 

 I want this to end. All of us want that. I think that it can only end if we do the following:

1. Remember and honor the victims. Thus the scrolling marquee atop this blog. I don't want to forget them. Ever. I'll update this post to add other sites and pages open for people to discuss and post on this topic, made to honor the dead and fight for the living.

2. Educate ourselves, then spread the word. Silence kills. It is not ok to call murdering a person a "mercy" because they are disabled. No one has the right to take a life that is not their own. How sad that people have done murder in the name of fighting for the unborn, but when those same people see that these babies are born disabled, they somehow feel it is fine to even consider dispatching them from the world. Disabled people have apparent challenges that are many times visible. Typical people can hide challenges. That doesn't make typical people superior. It just makes them different.

3. Remind every care provider, professional, and parent that the murdering a disabled person is a hate crime.  Some parents hesitate. They are afraid of scenarios where they might be the parent in trouble. Wow. Stop that. If your mind is going there, if you are that stressed, depressed, overwhelmed, run and get help. But don't support murder because you are afraid you might be the next parent locked up for harming your child. There is a qualitative difference between needing respite from care providing and committing murder.

4. I understand some families have agressive adults, or children or adults needing intensive supports and round the clock care in their families. If you cannot manage your child, continually seek professional help. Please do not listen to any employee of the system who tells you the short cut to group home placement is calling the police and using domestic disturbance calls to document your loved one is aggressive. Or that euthanasia is what your loved one would want if they could tell you. Probably the largest number of deaths from catastrophic encounters with law enforcement occur because families are told to do this to get their adult placed in a residential setting. And the right to take a life in your care is not yours.

5. Save lives. Be an active neighbor, a mindful witness, a concerned friend. If a parent, care provider, educator, or staff member confesses they are depressed, suicidal, overwhelmed, help them get help. Help them by making phone calls, bringing meals, raising money for respite, or positive behavioral supports that can help the whole family cope. If nothing else. advise they consider a compassionate removal of their loved ones into the system. But please, please, do not ignore cries for help.  And respite works two ways. There is the concept that care providers need respite. But more often than not, regular respite activities for disabled loved ones are welcomed by them as well.

So the victims will be on display on this site this Autism Acceptance Month, maybe longer. Because new murders keep happening . And they won't stop if we avoid speaking of it for more pleasant things.

In Memory of Robert "Ethan" Saylor, 26,  Steven Simpson, 18, and all those who came before them. 

White Polo Shirts, Autistic Eyes

Multiracial boy whistling, sitting on brown leather chair  wearing a white polo shirt

 with the words "stand against restraints, seclusion, and bullying by teachers"

About a week ago I was looking for a recent picture of my son stimming as my annual contribution to Paula Durbin-Westby's Autism Acceptance Year site, and came across one of my favorite recent photos of him. I decided that this would be his official Autism Acceptance Month photo this year. But why I made this decision requires the story of how he came to be the proud owner of what I believe is the only white polo shirt with the provocative words "Stand Against Restraint, Seclusion, and Bullying by Teachers" manufactured anywhere, to date.  That slogan was emblazoned on t shirts and is now part of the history of the protests brought to the very door of the Judge Rotenberg Center in the course of a valiant war to release one of the few tapes of sustained torture that survived the purging of evidence related to charges brought against the center over  the many years of its existence. So here is the story.

Mustafa was one of the first customers to order a t shirt created by autistic activist Lydia Brown, for those of us who were families fighting against maltreatment of autistic children in school placements of all kinds. By this time Emily Holcomb was safe and Chris Baker's petition letter was being passed through all internet social networking channels. No one knew that  Cheryl McCollins would come down like the wrath of the Lord on the JRC in court and request the court release the video of the 30 hours of torture her son Andre suffered at the hands of staff to the media. Everyone got their new t shirts and was happy. The problem was, once the shirt was on him, Mu would not take it off. As happens with some children, he liked the shirt and wanted that shirt on every day. Of course it began to fade from frequent washing. And there was no guarantee that he would like a new identical t shirt as much. More importantly, he needed to dress more formally for some of the places we were going and that t shirt was too casual. I posed the problem to Lydia and asked if she could do me a favor that might make both Mu and I happy.  The result is the white polo shirt in the photo above. Even though the writing beautifully stitched on the right breast area makes special needs service professionals wince, they regularly compliment him on the how great the white shirt looks against his dark tan complexion.

The magnitude of what this photograph means to me becomes clear when it is realized that although Mu did not choose to stop whistling while I was taking the photo, he did look right at the camera. He is, by nature, someone who does not look directly at anyone, so when he does it means you have been given a gift. This is also the first photo in which he is beginning to look like the man he will become. And that small sign of a different operating system, his autistic eyes, look for a brief instant directly into mine. If you have spent any time around autistic adults and they graced you with those eyes you will recognize the eyes of your children and catch your breath. The feeling is one of finding a long lost cousin of your child at a family reunion. You see the eyes, even in complete strangers, and you don't have to ask. Even when they don't say "I am autistic", you know.

 It came to me recently that one of the many reasons I care so much for all of these activists, and all those autistic children and adults they fight for,  is because they have, regardless of color, my son's eyes.  When they are able to look directly at me for an instant, it is a gift and a surprise, and at that instant I remember my son and how much we love him.  I "see" my autistic son is growing up.

Autism Speaks, I Want to Say....

I realize your campaign this year is targeting my family. You are trying to tell me you represent my nonspeaking son and me as his parent. I can tell you if you want my attention this is not the way to get it. Let me give you some help, so your next film effort is less, how should I put this, offensive.

1. Don't "hack" my son's brain. I find the concept of "Hacking Autism" offensive. When I use dictionary.com to look up the definition of the word hack the first things I see are:

hack1   [hak]  Show IPAverb (used with object)
     1.  to cut, notch, slice, chop, or sever (something) with or as with heavy, irregular blows (often followed by up  or down  ): to hack meat; to hack down trees.
     2.  to break up the surface of (the ground).
     3.  to clear (a road, path, etc.) by cutting away vines, trees, brush, or the like: They hacked a trail through the jungle.     4.  to damage or injure by crude, harsh, or insensitive treatment; mutilate; mangle: The editor hacked the story to bits.     5.  to reduce or cut ruthlessly; trim: The Senate hacked the budget severely before returning it to the House.

The word brings gruesome things to mind! So associating this verb with my son's Autism, which primarily rests in the wiring of his brain, makes me want to grab him and run far away from you.

2. Stop degrading the Autistic individuals in your films by allowing their own parents to insult them. Example: During your film, a mother describes words spoken about her own son: "he's really sweet for a kid with Autism". This is called socially ingrained ableism. You know, a type of socially ingrained bigotry. Here is another example from my own life as a woman of color. When it was announced that I had gained membership in the National Honor Society, a guidance counselor followed with "I'll be damned. She's pretty smart for a black girl!" Your film shows this young man's mother is ableist about her own son.  Sadly she doesn't even realize it. She thinks she's said something kind about him.  This brings back memories of Autism Every Day, which I have been trying to forget since I saw it.

3. Be Inclusive of the Whole Spectrum. All Autistic people can and do benefit from Augmentative and Alternative Communication (AAC). The video, by excluding Autistic people with verbal speech who can and do use AAC  supports, perpetuates the "not like my child" and function label tropes. This video could have  included everyone in the community to show how AAC and FC positively impact the lives of all individuals on the spectrum regardless of age. My son is an AAC user, but I also know children who have verbal speech and use AAC support to help with challenges to expressive and receptive communication such as auditory processing disorders and selective mutism.

4. Let Autistics Speak Freely. Here was a great opportunity to turn things around. Have Autistic people of all age ranges use AAC and FC supports to "speak". Families placed their nonspeaking children before your cameras, trusted you to present their families fairly and your organization again went and turned them into "Jerry's Kids".  I grew up with the Jerry Lewis telethons, the wheeling out of the poster children and circus-like atmosphere, all in the name of raising money. My advice is to leave those tactics out of your fundraising efforts.

5. Give Equal Representation. It will never happen, but I must keep insisting you provide equal representation by adding Autistic Adults on your board of directors, and including Autistic adults as part of the real decision making process in your organization. The world is full of capable Autistic individuals, who communicate with verbal speech or type. They have advanced college degrees, solid careers, and are quite capable of sitting on the board of your nonprofit organization. Many of them use their unique expertise in their chosen professions and their personal understanding of Autism to continually help many others in our Autism Community. I know how I would feel if the NAACP had a board of directors and every position except two were filled with White people. And if that organization insisted loudly that they knew what was best for people like me, people of color? I asked myself what I would do.  What if they attempted to drive public policy based on the idea that Black people, due to our racial differences, could not be allowed self determination, the right to vote, or the right to be included in all aspects of public life?
Sound familiar?



Until you show you understand and respect the civil rights of my son and all those like him, you don't speak for him. And sadly, your latest fundraising film effort makes it clear that won't change..