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Why We Need More Diversity at Autism Conferences

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Besides birthdays and anniversaries, there are two months out of the calendar year that have extraordinary significance for me. In 2014, at the age of 36, I was officially diagnosed with autism spectrum disorder (Asperger’s), and since that time I have been on a journey of self-discovery and self-advocacy.

Being diagnosed after decades of struggling with social anxiety, sensory processing issues, as well as being stereotyped and segregated from some sections of society, has caused me to have a greater appreciation for history, particularly a greater appreciation for my own history.

April is National Autism Awareness Month, and my diagnosis and my newfound appreciation for history has ignited a passion for autism awareness, acceptance and advocacy. April is only one month, and there is far more work to do in our society in promoting autism acceptance than can ever be done in a month. But April has still become special to me.

Then there is February. As we all know, February is Black History Month. Beginning every first day of February, we turn our attention to reflecting on the many contributions African-Americans have made throughout the history of this country. Black History Month initially began as “Negro History Week” in 1926. Initiated by Carter G. Woodson, a noted African-American scholar, educator and publisher, the aim was to include into the annals of American history the significant names and notable accomplishments of its black citizens. Black history is American history, and in 1976, the week was expanded to an entire month in February to coincide with the birthdays of Fredrick Douglass and Abraham Lincoln.

Growing up as a young boy, Black History Month was important to me because it allowed me to identify with amazingly successful people who had a tremendous impact on the lives of others and that looked like me. The late Maya Angelou, a great African-American poet and civil rights activist, once said, “It is time for parents to teach young people early on that in diversity there is beauty and there is strength.”

For me, that is the beauty of celebrating both Black History Month and Autism Awareness Month. It points our society to the ever-growing awareness that diversity is needed, diversity is beautiful, and diversity is what will make our society stronger. We need a culture that is constructed through the collaboration of different voices — voices that have narratives that are important because they inspire.

Of all that I have been able to accomplish in my life, one of the things I am most proud of is my role in helping inspire my community to become more diverse and more inclusive. As a pastor, I am proud to lead a church that is intentional about diversity as well as racial reconciliation, disability awareness and inclusion, among the many other ways we strive to experience the beauty and strength that is born out of diversity.

Don’t get me wrong, we are by no stretch of the imagination perfect. We haven’t figured out all of the nuances of creating a space and a community that champions the cause of diversity, but we are devoted to the ideal that without diversity, as a community we are at best only at half strength.

February and April are important parts of the diversity discussion in our country, but what I have found to be challenging is the meaningful and intentional pursuit of creating more beauty and more strength by becoming more diverse in our recognition and celebration of people of color within the autism community.

Just two days ago, I searched for autism conferences being held in 2017. While the results of my Google search returned plenty of options all over the country and even abroad, one glaringly obvious observation brought me to the intersection of February and April. Many of the autism conferences had no keynote speakers that were people of color. As I spent over an hour combing through event after event and conference after conference, I discovered an overwhelming disparity in the lack of diversity within our neurodiverse community.

To be fair, there are many great organizations that are focused on African-Americans and other people of color who are impacted by autism. These organizations are doing tremendous work; however, the majority of what many may consider to be the major autism conferences, with the large budgets and big-name self-advocates as keynote speakers, lacked diversity. Most of the presenters, parent advocates, experts, and those who make a living communicating about autism didn’t look like me.

The little black boy in me frantically searched for faces that looked like mine. Where are the voices of self-advocates who look like me? Where were the keynote speakers and facilitators of workshops and webinars that I could identify with? Without much resolution to my search, it was then that the term invisible disability took on an entirely different meaning for me. It was in that moment I truly felt invisible. When current statistics show that African-American children are diagnosed with autism sometimes as late as two years later than white children, we need to discover more ways to intentionally include advocates who look like those little black boys and girls. When reports show that regressive autism may occur as much as 50 percent more often in black children than in white children, our community must do a better job at reflecting diversity by including the voices of black autistics into the mainstream so that parents and children have someone to identify with.

One of the primary talking points about autism is that it is truly a spectrum. It is a mantra many in the autism community live by. While I wholeheartedly believe autism is a spectrum, I also believe the strength of our community will be increased when the spectrum ceases to be segregated.

Dr. Christena Cleveland, an African-American social psychologist, writes:

“Diverse teams are more creative teams because they can benefit from the wide range of opinions, ideas and resources that diversity offers and apply it to a more thorough discussion at hand.

Organizational experts also believe that nondiverse groups find it harder to keep learning because each member is bringing less and less unique information to the table. Similar people share similar experiences and acquire similar knowledge, but diverse people differ in their experiences and acquire diverse knowledge. In the end, the diverse group with access to diverse knowledge wins.”

As an African-American and as an autistic individual, I love both February and April. I love the ability to promote diversity. I love my heritage. I love including the contribution of African-Americans into American history. I love the autism community. I want us to win, but in order to be better, bigger and more beautiful, as a community we must commit to ensuring that diversity is a priority in educating the world about neurodiversity.

Open the stage to more voices of color. Call on those in the community who can provide our community and our cause with new experiences, new insight and new learning opportunities. Create space for advocates who help build more beauty and strength into our movement by bringing ideas and resources to the discussion of autism. Help close the diagnostic gap between black children and white children by offering more faces of color to the conversation of early intervention and services. Let’s make neurodiversity a movement not just focused on diversity of cognition, but also diversity of color. Let’s build something that’s stronger. Let’s build something more beautiful. Let’s build something incredible.

Image via Lamar Hardwick.

A version of this post originally appeared on Autism Pastor.

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What I Liked (and Didn't Like) About My ABA Experience

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I’m 23 years old and I was diagnosed with autism at the age of 4. During this time, I spoke in my own language, I had a lot of extreme behaviors, and I found the world to be a horrifying place.

When I was 6, I started having home-based applied behavior analysis (ABA) therapy, and this went on until I was about 13. This therapy was not only home-based, but also involved working in the community.

For example, we would frequently walk to town. I had therapists coming to my house every day (except for weekends) to teach me new skills. I prefer to see the therapy I received as a support to make progress rather than an intervention that changed me. I, along with my mother, speak to parents who attend the ABA Saturday School in Liverpool and Manchester. I am glad parents want to listen to me to understand and learn from my experiences of ABA.

I know there are some adults who had ABA as a child and may feel that it “damaged” them. I believe ABA has been done badly in the past, but it can be helpful if it is focused on the child and based on play and interests. This was the case for me as a child. Despite this, there were a few programs I didn’t think were helpful, which I will address later.

I’ve made a lot of progress from when I was a child. I don’t think I would have made as much if it wasn’t for the therapy I received. The therapists taught me a lot of things. They taught me social skills and everyday living skills, like brushing my teeth and washing my hands. Those things might sound very basic, but to me they were challenges. I think the biggest and greatest thing I learned from ABA was how to control my anger. Before then, I would get very aggressive and kick and hurt others. With the therapy, I learned how to manage my anger and anxiety.

One of my favorite memories was our first banquet when I was about 8. We had been learning about the Middle Ages, and my mum and four siblings would join in and dress up. This became a tradition, and we would end each term with a banquet. I loved them so much; we would plan them, the menu and study the topic. I think they were teaching me a lot of things, but it was fun for me. We had a lot of topics: pirates, Egyptians, “Star Wars,” “The Lord of the Rings,” Christmas, “The Chronicles of Narnia,” “Charlie and the Chocolate Factory,” the Tudors, “A Series of Unfortunate Events,” “Doctor Who,” “High School Musical” (embarrassing, I know), “Little House on the Prairie” (by now my sisters were getting in on the act), and the last one was a McDonald’s banquet.

The therapists also tried to help me to make friends by taking me to Beavers. My therapists would often invite some of the boys from Beavers back on play dates with me. This helped me to work on my social skills. I enjoyed hanging out with these boys, but I didn’t always follow the rules. One time I was with a boy at the park, and I left him to go on the swings by myself, which apparently you’re not supposed to do. The therapists would also play Action Man with me, at the same time as introducing me to how to play with other kids.

They did also use my interests to teach me. One of the therapists would draw “Sesame Street” pictures, and we would talk about the picture. We would work on sequencing, and I would say what would come next in a story. I found a lot of this fun.

I also went to a trampolining/gym club with home educators. I enjoyed going on the trampoline. I have always found the trampoline has helped to stimulate my mind and keep me calm. I still enjoy going on the trampoline today. My therapists would also help teach me turn-taking by playing games with me, like Pop-Up Pirate, Pairs, Snap, Operation and Buckaroo. I really enjoyed playing these games, and I was learning about turn-taking and teamwork at the same time. I have also found that there are lots of times when being able to play games has made it easier for me to socialize.

They also helped teach me social skills and conversational skills. They would use role-play. Two of the therapists would act like they were having a conversation, and I’d be expected to give feedback on how good their conversation was. I think it is very hard to learn how to understand social interaction. In some ways, I believe the rules I learned during ABA have given me the social rules for talks I give today. It has also helped me to answer questions and talk to people after a talk. Socializing with peers is still difficult for me. I still struggle to talk about subjects that are not of interest to me or to know how to break into a group of people who are talking.

They also worked on multitasking and choice-making, although I still struggle with those things a lot; however, I may be better having to choose than I would have been without it. I still feel anxious in these circumstances, but I used to have a meltdown if put in a situation where I had to make a choice. My therapists helped me to choose by giving me a choice of something I really hated and something I loved. For example — cheese or a curry; I detest cheese and love curry, so making those choices was easier.

I feel I owe a lot to the support I received as a child. However, there are a few experiences I didn’t like. I had one consultant who tried to control my stimming 24 hours a day. My parents refused to cooperate. I’m glad they did. I believe this would have done me a lot of harm. Stimming has its purpose. When I stim, I’m going deep into my own world. I’m reliving certain memories, often with a twist on them, or reliving what I’ve seen on film. I also stim when getting really excited, when I’m focussing on a special interest, or even when I’m processing what’s happened during the day. You could say part of the whole way I think works through these movements.

Stimming should not be stopped. When those on the spectrum have learned to control it all the time, I’ve found it can increase stress and anxiety. I am glad I can control my stimming to some extent in public, because people can be very nasty to or frightened of those who are different. When I was 15, one man thought I was having a seizure and wanted to call an ambulance when he saw me stimming outside a caravan.

Another thing my therapists did which I’m not too keen on was when I was taught about what was considered “cool” and what was considered to be “not cool.” This was at a stage when they were trying to get me interested in things typical kids were into. It seemed like they were trying too hard to make me “normal.” I don’t think that’s a good idea. At the end of the day, those of us with autism are different. That’s who we are, and this should be respected. Is “normal” really the greatest thing we can strive to be? I don’t think so. When helping kids with autism, I believe the emphasis shouldn’t be on trying to make them as “normal” as possible. It should be on trying to teach skills to cope in society while still being different. If we try too hard to be normal, I feel it’s just going to lead to depression and anxiety, because we simply cannot become something we’re not. In my opinion, even if we could become normal, we shouldn’t. Being different isn’t a bad thing, and I’ve found there are a lot of advantages to having autism that shouldn’t be overlooked either.

The “cool, not cool” approach was dropped in the end. When this was dropped, I had another consultant who used my interests to teach me. This was a much better approach for me. Being taught through my interests is probably my most vivid memory from the therapy I’ve had.

If you want to find out more about my childhood, ABA and my life’s story in general, then do feel free to check out my book, “Thinking Club: A Filmstrip of My Life as a Person With Autism.” When I talk about my experiences of ABA and the progress I’ve made, some people do seem to be under the impression that my autism is “cured” and I no longer have it. This could not be further from the truth. I am very much still autistic, and I always will be. It’s a part of who I am as a person. I still have a lot of difficulties, I still have a lot of anxiety, and I still need a lot of support in my day-to-day life. However, it goes without saying that I have made an enormous amount of progress from when I was a young child before I had the ABA therapy.

If I hadn’t had the ABA, I don’t think I would have the same level of control over my anger that I have. I can still feel very angry inside, but I am in control of my actions. I also think I would have very little social skills. I still struggle socially to a significant degree, but I think I would be utterly clueless socially without the ABA. I might struggle more with my senses as well. I still have some sensory issues, but as a child, I couldn’t even walk into a shop because my senses were so heightened. I was helped to cope with this in my therapy. I also don’t think I would have been able to express myself quite as well if I hadn’t had it. I certainly don’t think I’d be a public speaker if I had never had ABA.

I am still in touch with two of my ABA tutors; Donna still supports me to go to some of my talks. I prefer to call her my assistant or associate these days. Annette is now a member of our family. Yes, that’s right, her son married my sister Naomi. I also still email Annette and visit her sometimes; she lives a long way from me now. I was very blessed to have the same people work with me for many years during my childhood.

If you’re a parent and considering ABA for your child, my advice would be to look at your child and consider whether it would be the right approach for him or her. Your child must be respected as a person, and you must not make the mistake of targeting the autism that is in your child. However, if you feel ABA is right for your child, I think it’s important to get the right consultant who’s not trying to “normalize” the child, because there can be consultants who try to do just that. I have heard some adults on the spectrum say ABA ruined their life. But when ABA is done well, I believe a lot of progress can be made as a result of it.

Now, that’s not to say ABA is a good tool for all children with autism, because autism is so diverse, and different techniques help different people. My mum used a lot of the therapy she had done with me to help my father recover from a stroke in 2010. I found it hard that my father made such quick progress when it took me so long to learn everything.

I did also do some brain training programs in my early- to mid-teens, which also helped me. I think I had a happy childhood; I still wish I was in it sometimes. Do I have any regrets? Yes. I wish I’d had superhero and “Les Miserables” banquets. But maybe I can do that with the new autism social group I have started. That would be fun!

Thank you for reading. I hope you enjoyed this article and learned a lot from it.

This article was originally written for autism parent groups.

Image via Contributor.

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What Working Means to Me as an Autistic Person

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As an individual on the autism spectrum, I have found many benefits to having a job. I understand this is a position that not enough autistics are in. I hope one day in the near future, all autistics will be able to find fulfilling work that stimulates and captivates their minds. I believe the relationship between autistics and employment is symbiotic. Autistic employees can offer many benefits, things such as persistence, attention to detail, and a genuineness that can be difficult to find. At the same time, the ability to work can come with many benefits to autistic individuals. Working has become so many things to me.

One of the first things that working means to me is an increased level of independence. This is multifaceted. With any type of employment, individuals gain some level of financial independence. Autistics are no different here. Beyond financial independence, I have also gained more independence in my daily life. It is up to me to get myself ready for the day and to get to work on time while managing other household responsibilities. Perhaps the most important facet of independence, to me at least, has been the independence I have found at my job itself. I have a unique job, doing video breakdown and statistical analysis for basketball teams, which comes with odd hours, varying schedules, travel and lots of sensory overload. Through my job, I have proven to myself I am capable of more than what many people said I would be. On a daily basis, I work on my own to complete assigned tasks to the best of my ability, going beyond what is asked of me.

As a result of my newfound independence, working means an increased level of confidence. I have become very confident in my ability to do my job as well as, or better than, anyone else. My confidence in my skills has increased as well as my confidence in my ability to compensate for my weaknesses. For example, although I am not very good at eye contact, I am confident enough that my work will speak for itself. I let my work speak for me, rather than my social skills.

Working, overall, means happiness for me. I don’t “love” much in life, but I do honestly love my job. I get paid to do what I love — watch basketball! I love that I love going to work every day. I love that I come home every day from work absolutely exhausted because I did my best. I have become a much happier person since gaining employment. The doom and gloom is gone and has been replaced by happiness and positivity. I am very thankful for this change! I am happy with my job and with my newfound independence and confidence.

Within all of what working means to me is how I got to where I am today. Undoubtedly, where I am is a result of my team, my support system. I am so thankful to have so many people who believe in me, especially my co-workers and bosses. Without these people, working could mean the complete opposite of what I have described here. For this reason, I don’t just want any employment for autistics. Individuals on the autism spectrum are worthy of fulfilling and meaningful employment and should not settle for anything less.

Image via Contributor.

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A Matter-of-Fact Breakdown of My Recent Autistic Meltdown

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Meltdowns can be painful, terrifying and embarrassing. I had one recently and thought I would break down what happened and how it worked up to what it became.

These episodes happen when my information or stimulation input becomes so intensely overwhelming that I am completely unable to function or interact with anyone. Again, for me they are painful, scary, isolating and sometimes dangerous. But they are not something I do intentionally or for attention. I hate them as much as anyone else might. I just wish some people would make an effort to understand it.

Two Days Prior

— I was not heard when expressing an issue.

— I was told something that invalidated one of my serious issues.

The Day Before

— My child threw several loud fits during the day.

— I went shopping and had a lot of new input.

The Day Of

— I overslept and did not keep my routine.

— I didn’t manage to eat early.

— I didn’t get a chore done, and could not get the energy to do it.

— A live-in person verbally triggered my guilt over the unfinished chore.

— An argument.

— And then the meltdown.

Here are the behaviors displayed leading up to the explosive episode, which must be noted.

Two Days Prior

— Mild stress communicated

— Less physically functional

— Increase in irritability

The Day Before

— More difficulty functioning

— Somewhat more irritable

— Distant from everyone

The Day Of

— Before the “Rumblings” Really Started —

— Depressed behavior (bedridden, sullenness, tiredness, distraction)

— Lack of interest in group activities

— Mild frustration with environment

— During the Rumblings —

— Aggressive behavior

— Vocal agitation

— Difficulty staying on task

— When the Alarm Behaviors Started —

— Hands held close to my person, twitching

— Pacing around the house

— Angry vocalizing

— Defensive behavior

— During the Actual Meltdown —

— Yelling

— Crying

— Escaping

— Demanding

— Hardcore stimming (rocking, touching my arms, pulling my hair)

— Seriously aggressive behavior

— Repetitive language

— Showy, aggressive activity

This is what happened and how I got to the meltdown level in my autism.

Image via Thinkstock.

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To President Donald Trump From the Mother of a Child on the Autism Spectrum

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Dear President Donald Trump,

As I write this, you have yet to release your new health care proposal, which would in effect replace the Affordable Care Act (ACA), something you’ve promised to get rid of since you began your campaign for presidency.

As I write this, I’m also watching my almost 4-year-old autistic daughter play a board game with her behavioral therapist and wondering how your new health care laws will affect her future.

On the outside, she may look like any typical 4-year-old little girl: She’s taking turns, following the rules, and asking her therapist for a high-five after every turn. But what you don’t see is that it took two years of speech therapy and a year each of occupational therapy, applied behavioral analysis (ABA) therapy and special education preschool to get her here. A year ago, my daughter would have had difficulty playing the game because she struggled with asking questions and following directions. And the year before that, my daughter only had 15 words.

We have fought every inch of every mile along the way so far to make sure she received all the proper referrals for every evaluation and therapy, because I knew the importance of early intervention therapy in the likelihood of her successful long-term development. We have been fortunate to have both a wonderful team of physicians and equally exceptional insurance along the way that have been an integral part of providing my daughter with the therapies she needs.

But our journey is just beginning, and there is a high likelihood she will need continued services for quite some time. There is no guarantee at this juncture that she will ever be free of the need for special needs services.

Like so many parents of children with developmental disabilities, we are reliant on insurance to be able to access these services. I know you’ve promised “insurance for everybody” and “to not have people dying on the street,” but for parents of children with special needs, it’s more complicated than that. One in 45 children in this country are diagnosed with autism spectrum disorder, like my daughter, and require special therapies and early or continued interventions to help them develop the skills to become independent adults. Because of the sheer cost of these therapies, they can become completely inaccessible without insurance coverage. The Affordable Care Act ensured those with autism would receive access to these habilitative services. Prior to the ACA, insurance companies would often determine these services weren’t medically necessary for those with developmental disabilities because they weren’t rehabilitative in nature.

What concerns me is that in your haste to replace what you view as a broken system even in its infancy, you may not realize that many of its provisions were working to help families like ours — families that depend on access to these services as part of our children’s well-being. I sincerely hope any new health care propositions meant to replace Obamacare will have similar provisions that will protect not only the future of my daughter, but the future of the millions of other children with developmental disorders in this country. Please don’t forget about them in your legislation. They may not necessarily be left “dying in the street,” but they would certainly be left behind.

Sincerely,

Ashley Kwiecinski

Mother and Advocate

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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I Am Autistic and Was Abused as an Emergency Room Patient

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In May 2009, I had a violent meltdown that lead to law enforcement and an ambulance ride to the ER. Upon arrival I was greeted by a screaming baby, which my ears could not tolerate. I covered my ears and began screaming in distress, and immediately I witnessed the ignorance, prejudice and abuse of my junior high and high school past crashing down on me in adulthood.

Several people were in the room asking questions like, “What’s your name?” “What meds are you on?” “Stop screaming, you’re scaring the lady in the bed next to you!” On top of this, the baby was still screaming, which I was reminded “isn’t its fault!” in a derogatory yell. I reminded the nurse through tears that I have autism and sensory processing disorder and cannot help my response, either. That brought a threat, “If you can’t be quiet, then we’ll have to give you Haldol. You can’t take Haldol? (I am allergic) I thought you didn’t want to talk to me. Why are you talking to me now?” When I refused to take it, she went to get security.

I picked up the phone and called my mom, remembering to dial 9 first, as I am familiar with hospitals. When my mom talked to the nurse, the security guards left. I reminded her it is her duty to know the basics of autism and not my responsibility to educate her.

After four hours, with my mom holding my ears each time the baby cried, the case worker came and spoke with me, made out a customary wellness plan, and then I was discharged.

How could this situation been handled differently? 

Simple.

If you are a nurse or any other member of the medical community, you know the first rule of medicine is do no harm where there is no harm. De-escalate the situation! Don’t make a bad situation worse by being sarcastic or yelling. Find out why your patient is in distress. Do what you can to make them as comfortable as possible (even if that means simply not being a jerk). Take your patient seriously. If they tell you they are allergic to a particular medication, listen.

The nurse I dealt with was reported to her supervisor. I can’t stress enough the importance of having an advocate to speak for you if you are unable. This goes for everyone. Someone in your family should have a list of your meds, your doctors’ phone numbers and a copy of your living will if you have one. This person should be a primary contact like a parent, grown child or spouse, and ideally he or she should live near you.

Lastly, report abuse of anyone on the spectrum. Don’t settle for just an apology. I’ve been thrown out of another hospital because they couldn’t keep me from using the chain of command. I chose to report the abuse I witnessed and personally experienced as a patient.

If you are interested in learning more about law enforcement training efforts to help autistic people, here is a police training video. If you need to report abuse, Google who to contact in your area. In Illinois, you can report abuse anonymously here. You can also report abuse here.

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