To the person who found my blog by searching Google for “feel like i’m a burden aspergers”:

You are not a burden.

You are a human being, and your life can be rich, full, complete, fulfilling and meaningful on that basis alone.

You have the same natural right to life and equality and access and opportunity as anyone else does, and anyone who claims that you are a burden is insecure and ableist.

You are beautiful beyond vision, talented beyond measure, intelligent beyond comprehension and bursting with the amazing capacity to live well and meaningfully and to share your unique perspective and way of existing in the world with everyone you encounter.

You are not broken or defective or lesser. Don’t believe anyone who tells you so, whether explicitly or implicitly, because anyone who says that you are less than because your neurology is divergent from a constructed norm is lying to you.

Your neurology is divergent from the accepted “norm” of human neurologies, but that’s not a bad thing. You are OK the way you are. Your brain is beautiful.

You may learn differently than your peers, need certain supports, accommodations or services in order to have full and equal access, think differently than your colleagues, communicate differently than your family members or experience sensations differently than the other people around you.

But those differences are not bad. They are part of what makes your experience of life unique and beautiful.

You have the capacity for deep, unbounded empathy. You may be moved to action by egregious injustices, and you may be the first to speak up in the face of wrong. You may form brief connections with others that will impact them for a lifetime without you ever knowing, or you may find comfort and trust in only one or two friends over your own lifetime. You may take intense pleasure in solitude, and you may have the potential for wild creative exploits.

You will have struggles that non-Autistics won’t face. And you will share some of your struggles with your non-Autistic peers. You may find community among other Autistic people, knowing that there are people with whom you can share space and communicate shared struggles and joys without ever speaking a word.

Your only debt to society is to change the world for the better, even if all that means is a perfunctory encounter with a stranger that leaves another’s life a little bit better, another’s worries a little bit less daunting and frightening.

You don’t owe society anything else.

And you are not a burden to society if you need any form of accommodation to navigate this world. The society in which we live was not constructed around the needs and experiences of people like you and me. In fact, it ought to be the basic, minimum standard of human decency to ensure that you and I have equal access as everyone else. And sometimes that means making accommodations for us.

If a person in a wheelchair wants to enter a building, there should be a ramp long before he ever gets there. And if a blind person wants to read a book, there should be an audio version long before she ever searches for it. Because that’s making the world accessible for everyone instead of keeping the world accessible only for a few.

If I need written, visual instructions with clear deadlines to do my job, there should be no argument about it. That’s not me creating a burden. That’s me demanding my equal right to full participation. There’s no one correct way to do things or experience life. To exist differently in the world does not make you a burden on society.

I believe society’s burden is to compensate, however slowly, for its long train of abuses, disenfranchisement, marginalization, discrimination, dehumanization and paternalism perpetrated and perpetuated against those who have been denied power, equal rights, and self-determination. That is the burden that society bears.

Emily Titon, Lydia Brown, Shain Neumeier, Alyssa Hillary, Kassiane Sibley and Savannah Logsdon-Breakstone mutually stimming during a November 14, 2012 Autistic Self Advocacy Network annual gala at the National Press Club in Washington D.C.

Follow this journey on Autistic Hoya.


It’s been a great year. After a seven-year journey, I finally landed a job. And not just any job, I hit the jackpot of jobs! I work for a nonprofit organization that serves individuals with Down syndrome. I can’t begin to express how incredibly rewarding my job is. I love it! I’ve realized over the past year that I went through all the other job interviews and rejections because I was supposed to end up where I’m at. It’s without a doubt my purpose, and I’m grateful for each day I’m at the office.

Something happened today that got me thinking about the past year. Well, a lot of years, actually. I was getting an annual review done by a nurse for a Medicaid waiver program that I’m on called Community Living and Support Services (CLASS). She checks in on me once a year to see how things are going and if my disability has changed. For those of you who don’t know, I have cerebral palsy.

I told her that it would be a pretty dull meeting due to the fact cerebral palsy doesn’t change much. I laughed as I said it and threw in an “it is what it is.” I’m very comfortable with my disability; it has its challenges, but who doesn’t have challenges, right? She said, “Well, with science these days, you never know, it might be a non-issue one day!” Comments like this don’t offend me in any way, shape or form. I hear it frequently.

This led to a discussion about research — which I do support — and I agreed that one day her “non-issue” comment could certainly be a possibility. Then I thought for a minute and said, “You know, I wouldn’t change a thing.” It surprised her, maybe because she could tell that I genuinely meant it. This isn’t the first time I’ve had this conversation with someone (and I’m sure it won’t be the last). I just find it interesting that people are surprised by my response.

From their viewpoint, my life would be much easier if I weren’t disabled. I don’t necessarily agree with that, though. No one is given a life without challenges, otherwise things would pretty uneventful. The fact of the matter is I’ve adapted quite well to challenges I face, as I hope most people would be able. Cerebral palsy is just a part of who I am. It’s by no means who I am. The truth is, I’m a young woman trying to figure it all out, just like most other people my age.

I don’t know, maybe the moral of the story is life is what you make of it, and I must say I’m splendidly happy with this life.

Elizabeth Hammond the mighty.3-001

On August 22, Gap held a fashion show to promote Ellen Degeneres’s new clothing line for kids, Gap Kids x ED.The show was significant for another reason: for the first time ever, one of Gap’s campaigns featured models who have Down syndrome and other differences not commonly featured in advertisements.

One of the young models featured was 9-year-old Kayla Kosmalski, a pageant queen who goes by “Princess Kayla.” Kayla was one of three models with Down syndrome to walk in the show on Saturday.

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Photo from the Princess Kayla Instagram page

Kayla landed the position with Gap through Changing the Face of Beauty, a movement that encourages brands to feature people with disabilities in advertising and media. Changing the Face of Beauty put 14 girls of all abilities in touch with Gap, including three who have Down syndrome.

Hopefully, Gap’s latest fashion show is the first of many experiences like it for models like Kayla.

I loved it,” Kayla told Mashable about her experience at the show. “My favorite part was dancing, waving, giving high fives, blowing kisses and making new friends.”

Take a look at more of Kayla’s beautiful photos from the event below.

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Photo from the Princess Kayla Instagram page
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Photo from the Princess Kayla Instagram page
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Photo from the Princess Kayla Instagram page
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Photo from the Princess Kayla Instagram page 
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Photo from the Princess Kayla Instagram page

Related: For the First Time, Gap Will Feature Models With Down Syndrome in Campaign

When I found out my son’s tonsils needed to be removed because they were blocking his airway, I was filled with dread. Everyone kept telling me it was a simple procedure, and there was nothing to worry about. That may be true for most children but not my son. He’s 2 years old and has autism and a moderate language delay. I knew the whole ordeal was going to be anything but simple.

Things went fairly smoothly until he came out of surgery. I had made a special request to be allowed into the recovery room before he came out of the anesthetic, but my request was denied. He awoke to a team of doctors and nurses hovering over him. Unfamiliar faces in an unfamiliar environment. To say he was terrified was an understatement.

I arrived in recovery to find him kicking and punching the nurses. He was pulling their hair and screaming louder than I had ever heard him scream before. The louder he got, the more staff rushed over to assist, which, of course, only aggravated the situation. They didn’t want me to go near him. They wanted to isolate him since they believed he was a danger to the staff and even to me. I was stunned and at a loss for words. My beautiful little boy wasn’t dangerous! He just needed a little bit of understanding.

I was close to tears when the most amazing nurse came along. She quickly assessed the situation and ushered everyone out of the room. She asked me what my son’s favorite song was and began singing it to him as she handed him to me. Gradually, he calmed down and fell asleep, exhausted.

Her kindness and compassion didn’t stop there. She arranged a private room for us in the ward, so he would feel more comfortable in such a strange environment. She contacted the head nurse and demanded my son’s special needs be considered for the duration of our stay. IV medications were ordered since my son refuses to take medication orally. A note was put on his chart that nurses were only to enter our room if absolutely necessary. And she even offered to do a double shift to give him some consistency.

I’d like to be able to say all the nurses we encountered after her were just as understanding, but unfortunately that wasn’t the case. However, the kindness of that one nurse gave me the strength to help my son during his days in hospital and the courage to be his advocate.

I wish I knew the nurse’s name. She was an angel who appeared at just the right moment. Perhaps one day she will read this article. I hope she does, because on behalf of myself and my son, I would like to say a giant thank you. Any child who ends up in your care while at the hospital is truly blessed.

Alexis Nooyen the mighty.2-001

Sometimes, a dog is so much more than a pet.

In the video below, a seizure assistance dog named Poppy appears to look over her owner Shannon, who begins to have a seizure. According to the 4-minute clip’s YouTube description, Poppy had alerted Shannon she would have a seizure 15 minutes before it began. This gave Shannon time to get to a safe place, where she then set up a camera to record. When Shannon begins to seize, Poppy licks her face. According to the video’s description, this action helps Shannon “come around quicker” as well as get rid of “excess saliva to help prevent choking.”

Seizure assistance dogs can be trained to respond to their owners’ needs in different ways. Some dogs seem to be able to sense oncoming seizures and then alert their owners to prepare, according to Canine Partners for Life, a service dog organization. Some dogs are trained to bark to alert people nearby when their owner is already seizing, while others are trained to activate alarm systems, according to the Epilepsy Foundation. Dogs can also be trained to lie down next to their owners to help prevent injury.

When my daughter, Caroline, was first diagnosed with autism, it was a surprise. I had been told countless times that Caroline was not on the spectrum — she was too social, made eye contact, did not engage in repetitive behaviors — so when she was diagnosed, I was completely unprepared. I didn’t know about sensory integration issues or joint attention; I surely didn’t think Sweet Caroline could permanently scar me or purposely hurt herself; I thought elopement was when you ran away to get married. I knew I had so much to learn.

I didn’t realize in order to learn about autism, I would have to develop a philosophy of autism. The sheer amount of conflicting information about autism forces parents of recently diagnosed kids to quickly develop a philosophy of autism, almost unwittingly.

My Philosophy of Autism:

I vaccinate because I believe science knows more than Jenny McCarthy.

I never anticipated that autism would be part of my life’s journey, but I love my tour guide.

In good times and bad, Caroline has autism. It’s part of who she is. I’m not interested in a cure, but I am interested in therapies and interventions that help manage Caroline’s challenging behaviors associated with autism and improve her quality of life.

Autism is a family condition in that it impacts every member of the family. Every single member of my family is different because Caroline is on the spectrum. Nearly every aspect of every day of each of our lives is impacted by Caroline’s autism.

I support early intervention and believe that insurance companies and the government have a big part to play in funding these interventions.

I first support research that improves the lives of those living with autism, and then I support the search for a cause of autism. By finding the cause of autism, I believe the medical community will have a greater understanding of autism and potential therapies. I wouldn’t trade Caroline for the world, but I would trade the toll her care has taken on my family’s health, careers and finances.

I don’t think awareness is enough. I want people to accept Caroline for all that she is and all that she has to offer.

Being a parent to child with autism is hard; it’s the hardest thing I’ve ever done. But parenting is one of the hardest things most any parent does. There are days my typically developing child (Vivian) tries my patience in ways Caroline couldn’t dream of — but people never say to me about Vivian, “I don’t know how you do it.”

Caroline’s happiness is not enough; she deserves to feel accomplished and challenged by things in life beyond her autism.

If you know one person with autism, you know one person with autism. I know Caroline. She is not one in 68 — she is one in a billion. Caroline is capable of the unthinkable (good and bad). She is different, but that should be celebrated, not mourned. And she is my hero, not because she has autism but because of how she handles it — with a smile of her face and a joke on her NOVA chat.

Follow this journey on Failure to Thrive or Ability to Overcome?

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