App for People With Autism Has One Thing All the Others Are Missing

A new mobile app could involve people on the spectrum in the development of their own new technologies for autism.

A consortium of British researchers from the University of Bath and the Universities of Southampton and Sussex released ASCmeI.T., which is an app that allows users with autism, as well as family members, teachers, therapists or anyone else involved in the autism community, to share their ideas about what kinds of new technology are needed, according to Modern Design Technology (MDT).

They can upload a one minute video which will be shared with researchers so that new autism technologies can be better matched with the needs of people within the community.

Via iTunes

This project is totally unique and encourages ‘citizen science,’” Dr. Mark Brosnan, co-investigator on the project from the University of Bath, said, according to MDT. “ASCmeI.T. is a simple yet highly effective way to enable people with autism to get their voices heard and to allow the creativity of a previously neglected group to be realized.”

Via iTunes

The app is free and available for download on mobile devices.

h/t MedIndia


The Problem I Have With the ‘Today’ Show Using Autism in This Report

Autism does not equal mass shooter. However, the media often include information in their stories that may lead the general public to make that assumption. Right now the tragic and senseless shooting at Umpqua Community College in Oregon is all over the news, as is the subject of autism. For example, the “Today” show ran a news clip on Oct. 6, 2015 with the description that “Information about the gunman in last week’s mass shooting in Oregon is emerging, indicating that his mother may have had an impact on his fascination with guns.” Then the first part of the piece proceeded to discuss not guns, but autism.

Here is the clip:

The reporter stated: “Startling new revelations about the mother of Chris Harper-Mercer, a shooter who killed nine people at Umpqua Community College last week. For over a decade Laurel Harper, a registered nurse, offered online advice on various medical issues like Asperger’s syndrome, an autism spectrum disorder that she wrote both she and her son struggled with.”

The story also mentioned that Harper wrote of dealing with a “screaming autistic headbanger.” Why was that necessary? Without explanation, it segued into the portion that was actually related to the story’s description: that the mother’s involvement with guns and the way she exposed her son to them may have possibly helped contribute to her son’s obsession with firearms.

So what was the link that viewers were supposed to make between the “new information” about autism within the family, and the new information about their involvement with guns? What was “Today” trying to imply? Why was autism even relevant to a story that seemed to be about the fact that the mother taught her son how to shoot guns?

It seemed to me to be a sensationalistic treatment of autism, not relevant to the story and disrespectful to autistic people in general.

Stories like these can help foster the fear and stigma autistic individuals so often face.

Other sources actually have gone as far as to directly link autism and violence. Earlier this week a Facebook page made direct, incorrect and hurtful statements about autistic people. They stated that a commonality between mass shooters was that they had a “lack of empathy and compassion due to autism.” I will not increase the notoriety of these trolls by stating the name of their page (which has since been removed from Facebook), but I will say that their claims are false. The statement “autistic people lack empathy” is a misleading stereotype. Many actually have an excess of empathy and can find it overwhelming, so they keep it inside. Others may express it in unconventional ways. But to make the overarching statement that they all lack empathy would be grossly unfair to a diverse group of people. Being autistic does not make a person more prone to commit violence.

Years ago, while the world was reeling from what transpired at Sandy Hook, bestselling author John Elder Robison wrote an article for Psychology Today called “Asperger’s, Autism, and Mass Murder.” Speculation had arisen then, as now, that the shooter may have had Asperger’s. Robison is himself autistic (he describes himself using both terms Asperger’s and autistic), and he warned, “Let’s stop the rush to judgment.” He also stated plainly, “Correlation does not imply causation.”

Some may argue that the “Today” show and other similar news sources were not implying that autism makes one more prone to commit violence. Unfortunately, as Robison wrote, when you jointly mention Asperger’s and mass murder, it causes the general population to make assumptions. He writes:

“…because the average person does not know enough about Asperger’s to know it does not turn people into mass murderers. They file that factoid away until the next time they see someone with Asperger’s. Then, instead of giving him a fair shake, they treat him as a potential killer. Everyone loses. As an adult with Asperger’s, who’s seen enough discrimination already, I’m not too happy about that.

So what do we do when we are faced with hurtful statements and misleading stereotypes? Part of me was afraid to write about this, for fear it would cause more people to get the wrong impression of autism. I have a son who is autistic, and the world is increasingly hostile to people like him — people I think are wonderfully unique. People who deserve to be treated with respect. Therefore I cannot keep silent. I will fight to make the world a safer place for people with autism.

I live in fear of how the world may treat my son and others like him. The world is actually more aggressive to autistic people than autistic people are to the world. Robison had similar thoughts, and wrote: “There is nothing in the definition of Asperger’s or autism that would make a person think we are a violent group. That’s reinforced by criminal justice studies telling us that people with autism are much less likely to commit violent crimes than the average person. Indeed, those studies show autistic people are far more likely to be victims of violence than perpetrators. 

“If you’re looking for a group of people to fear, we’re not it.”

I am grateful for the leadership and voice of people like Robison. Yet it upsets me that his words are relevant and necessary yet again. I am distraught that there was yet another mass shooting. I am angry that there are articles and Facebook pages and news reports out there that spread speculation that help contribute to the public’s misunderstanding of autism and also increase stigma.

I would ask media sources like “Today” to practice more responsible journalism. I ask them to be more sensitive to individuals who are already far too often victims of scorn, discrimination and hurtful stereotypes. If they do cover stories of autism in the news, I would ask that they consult with individuals who are actually autistic. I hope they will cover more positive stories related to autism and not just sensationalistic negative ones.

I would also encourage all of you to read Robison’s entire article. He says it so much better than I ever could. Help stop the spread of stigma and misconceptions.

We have so much more work to do to help make the world a better place.

A version of this post first appeared at Seriously Not Boring. Jennifer can also be found on Facebook at the page Seriously Not Boring

Lead photo source: Screenshot from the ‘Today’ show video

Why I Decided to 'Come Out' of the Autism Closet

I’ve always been autistic, but I haven’t always known it. I knew I was different from other people, but the difference didn’t have a name I was aware of. It was just the way I was. Some of my differences were pretty cool. Like the way I could easily remember and reproduce much of what I’d seen or heard, the way I could figure things out that stumped other people, how deeply I felt about things and my naturally authentic nature.

Other things, though, seemed more challenging for me than other people, like socializing, making myself understood, unpleasant noises and sounds and dealing with sudden changes. I was a living contradiction. I was reading on a college level in early elementary school, but I couldn’t tie my own shoelaces. I could endure intense pain, but the sensation of a tag from a shirt against the back of my neck or water inside my ears generated endless tears. I could converse easily with adults, but I struggled to make sense of my peers’ chatter. And even when I was comfortable with other kids, I couldn’t speak at all sometimes because the words wouldn’t come out right or were too hard to find. I needed my pen and paper to speak for me. My communication, socialization, sensory experiences and speed/manner of processing and responding to everything were so very different than everyone’s (except my mom).

Morénike Giwa-Onaiwu.1-001

For the most part, I didn’t have a problem with myself, but I wish things that seemed so easy for other people weren’t so hard for me. So I guess I did somewhat have a problem with myself, but only in comparison to other people, not from within. Because of that, I had a difficult time accepting myself for years because it seemed that who I was must somehow be wrong. Fortunately, I eventually realized I was exactly the person I was supposed to be. Sadly, it took years. But at least it happened. It still didn’t have a name, but I didn’t know there was a name anyway.

Until adulthood, I had scarcely even heard the name of term autism. I had little concept what it was. I recall a daytime soap opera I watched as a child that featured a character who had an autistic daughter. In most episodes, the daughter was hidden away at some expensive “special school.” Shockingly, the girl’s mother was embezzling funds to pay for her daughter’s tuition. According to the storyline, she felt she had no other options. The takeaway message seemed to be that autism was something rare, debilitating, tragic and required costly care. Other than that, I had little exposure to known autistics nor information about autism. It just didn’t come up.

Fast forward many years to motherhood, and I am blessed with the most amazing children on the planet, two of whom happen to be on the autism spectrum. It was through their diagnoses, subsequent research and thorough self-evaluation that I began to seek answers about my own neurology. Through them, I first suspected, and later confirmed, that I was autistic, too, but simply hadn’t been aware. It was extremely eye-opening and powerful for me to finally have this insight about myself. Equipped with this new knowledge, everything began make so much sense to me.

I only wished I had this awareness when I was much younger. It would have helped me understand how to better operate, learn, handle challenges and socialize. I could have avoided costly mistakes, made different choices and sought strategies to have my needs met in a way that worked for me. I could have had opportunities to stand up for myself. Armed with this knowledge, I’m now able to do those things. But I realized there were many lost opportunities from my past. I knew I could never get those years back. But now I wanted to try to give others what I hadn’t been able to have for myself.

I think it’s important to point out I was already a part of the autism community as a parent of autistic children, but I didn’t have to reveal my own diagnosis to others. Because it can seem like the voices of autistic adults are perceived as less relevant than the voices of non-autistic parents/caregivers and because individuals like me can be disregarded by some members of the autism community as “not really autistic,” “not autistic enough” or “not like my child,” it may seem there was little to gain by coming out as autistic. And a lot to lose. But I still wanted to. I was the same person before and after the discovery — except I wasn’t. I was no longer unaware about who I was. All of me. My full, true, perfectly imperfect autistic self.

I wanted anyone out there who remotely identified with me in any way — age, gender, ethnicity — to be encouraged by my existence. To know that they were not alone. I wanted autistic kids (like my own and others) to know that it’s OK to grow up to be an autistic adult like myself. I wanted people to know that even though I have real challenges, being autistic has also afforded me many strengths, too. I wanted autistic adults who were diagnosed late to know there was a community filled with people like me who have found one another. I also wanted people from various groups who have been often less represented in autism to hopefully feel a sense of kinship with me.

So when I came out as autistic, I did it big. On that fateful day, I participated in a local cross-disability festival, which highlighted various films, images and other content with a focus on disability acceptance. I stood next to a “larger than life” image of myself that was part of a traveling photo exhibit. Next to my image were the following words:

“Morénike is an autistic adult who proudly wears the hats of wife, mother, advocate and student. She is passionate about social justice, global health, education, adoption and community empowerment.”

I came out as autistic publicly and have never regretted living an authentic life. I’m free to be me. I swung the closet door open that day and stepped out, never to return.

Follow this journey on Just Being Me…Who Needs “Normalcy” Anyway?

What I Learned About IEP Meetings From the Other Side of the Table

Teaching children with exceptionalities has been my passion, career and life for many years. Little did I know my career and personal life would cross over. The transition from special education teacher to special education stay-at-home mom left me feeling like I was entering the special education world for the first time. 

The world of special needs was completely new to me, even though I kept hearing, “Oh, you are a special education teacher so this isn’t new for you,” or “How wonderful that you have that background as a mom.” The moment my 2-year-old son, Milo, was diagnosed with autism, my mind went blank, and I was truly a newbie.

One day I was sure I would excel at was truly the most eye-opening day for me as an educator. I quickly knew that my education had not prepared me for my son’s first IEP, although this was a day I had said would come easy to me because I had done it so many times before.

With this in mind, there are four things I want teachers to know from the parent perspective:

1. Give us time.

It was always hard for me to understand why parents wouldn’t send in the pre-paperwork on time or even at all. It would take weeks if not months to narrow down a date to meet. 

I knew exactly what that big package was when it arrived. I put it on the counter and put my catalogs over it. If I couldn’t see it, it wasn’t real, right? Opening mail addressed to the Parents of _____________ has been a daily reminder that my now-3-year-old is not typical. We receive mail daily from therapists, case workers, the county education office, the school district, etc. It is at times overwhelming. We have to schedule every meeting with such precision. I have to make sure it fits in with 20-plus hours of therapy a week, make sure my husband has the time off and find a babysitter for my newborn. It is not easy.

2. Walk into the meeting with the parent.

I walked into the meeting and saw 16 case workers, teachers and a variety of behavioral and developmental therapists staring at me. I quickly became overcome with anxiety and emotion, and I instantly felt lost. My knees were weak, my voice shook and I had tears in my eyes. As a teacher, I will always walk into the meeting with the parent.

3. Do not skip “basic info” pages.

We started the meeting by skipping over the first page of my son’s IEP. It had our names, address and basic information on it. As a teacher, I understand why this would not be a page to take much time for, but it was my hardest page to get through. It was the first time I had seen an IEP with my son’s name on it. His name was printed small, the word autism was in bold next to his name. I needed a few minutes to digest it, to understand it, to accept it. While going through the next few pages, it was the only thing I thought about, therefore leaving me in a fog for the majority of the meeting.

4. Don’t judge parents for calling and asking questions afterward.

I left my son’s IEP with such mixed emotions. I was trying to comprehend what had just happened in the past few hours as I was holding back tears and trying to stay focused. I realized I had quickly judged too many parents for calling after the meeting asking questions. I was quick to think, We just went over this. But I was one of those parents who called for many days, with many questions.

I learned I knew all the laws, what boxes needed to be checked and what questions to ask the parents. I had not known how necessary it was to be an emotional supporter to the parent. I learned the little efforts are not so little.

I will walk in with the parents and walk them out. I will never skip over anything, I will follow up, I will call, I will shake hands and I will hug.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

The 3 Words a Doctor Said That Changed the Life of My Son With Autism

Dear Doctor,

Last April, you changed not only my son Brock’s life, but my life as well. I was scared to bring my son to your office. Prior to seeing you, no other medical provider took the time to truly listen to my concerns for my son. I was told, “Boys will be boys,” “You’re a first-time mom” and “He’ll outgrow it.” Another provider even laughed in my face while I was in tears and said, “All you parents these days want a label on your child.” But it was never about labeling my son, it was about finding him the help he truly deserved to lead a successful life.

Brock was born healthy at a whopping 8 pounds, 10 ounces. During the first year of his life, he hit milestones ahead of schedule. But around the 18-month mark, he started to regress. After getting a second, third and even a fourth opinion, I was at a standstill.

When it was time for Brock to enter preschool, I decided to homeschool him instead. That’s when I decided to bring Brock to you. For more than four years, I wrote in a journal about the things that worried me: his lack of successful potty training, delayed fine and gross motor skills, always needing a set schedule, obsessive and repetitive behaviors and not maintaining eye contact. Although his vocabulary was advanced for his age, his words didn’t fit with what was being discussed. He would scream as if he were in pain every time his teeth and hair were brushed. And when his normal schedule was disrupted, he would have what I thought at the time were severe panic attacks. It was all very concerning.

Lindsay Jolly.2-001

When we walked into your office that day, I wasn’t very hopeful after my past experiences. After being laughed at, I was starting to think that maybe it was me. I thought I was a bad mom, even after reassurances from my family and friends (the people who truly know me) that I wasn’t. When you spend your child’s whole life trying to do everything in your power to get help for him with no results, it does something to a person’s mind. I was in a dark place emotionally.

I’ll never forget when you walked into that room. For whatever reason, I was immediately set at ease. You looked at me like I was a person and not an inconvenient part of your day. You truly listened to all of my concerns as I was once again in tears. I practically begged you to help me help my son. You said the words I was waiting to hear: “I believe you.” That was the most monumental moment of my life. At that moment, all my doubts slipped away. I knew things would become easier for Brock. Because after all, it was all about him. My son needed those three words just as much as I did. Those three words completely changed his life for the better in the 18 months since.

Brock was officially diagnosed with autism and sensory processing disorder. He’s now in the first grade, and in the past year, he has made many strides. A year ago he couldn’t read, and now he’s reading at the same level as his peers. He wrote his name for the first time, and he gets services through the special education department at his school, along with occupational therapy, behavioral therapy and play therapy. I even got him a dog who helps calm him during meltdowns.

I don’t know where he’d be at right now if you didn’t open all of these doors. I don’t even want to think about it. But what I do want to say is thank you. Thank you for treating us like people and for truly listening to my concerns. I’ll forever remember you as the doctor who changed our lives. Because you did. My son deserved to be heard, and you heard him. Even though he faces an abundance of challenges each day, we now know what we can do to help him overcome and cope with them.

Real People. Real Stories.

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We face disability, disease and mental illness together.