When a Woman in a Diner Told Me, ‘I Don’t Believe in Autism’

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“I don’t believe in autism,” retorted the woman as she exited the diner. She was an older woman, so perhaps she was a product of a generation that was more unfamiliar with autism. She was also leaving so I decided not to lecture her while following her to the parking lot. This happened several years ago, but sometimes I think of it and I wish I had the opportunity to explain autism to her.

My extended family was enjoying a meal at the diner when my 5-year-old son, Danny, realized he was bored and needed to leave immediately. When he was first diagnosed with autism, I often confided in strangers he was on the spectrum if he was doing something others might think was outlandishly unacceptable. Why should they think he was just being bratty? Plus, I didn’t want to leave them with the impression that I’m a bad mom who can’t control her offspring.

Opportunities for educating people seemed to pop up relatively often. After Danny finished his meal, he said, “Can we go?” which can be translated to “I’m leaving, you’d best join me!” I fumbled around in my purse looking for something to captivate his attention. Fortunately, my mother-in-law quickly handed him her iPhone to distract him from the horrifying reality that we were staying for a while.

Elise Phillips Margulis the mighty.3-001

I noticed the older woman look up several times during Danny’s outburst. She probably wasn’t the only person whose eyes were drawn to the spectacle. I think she offered some advice about how to calm him down.

Since I was still in “apologizing for his behavior by invoking the diagnosis” mode, I mentioned to the woman he had autism. She said that this generation was diagnosis-happy and everyone was being labeled.

Many children with autism are physically indistinguishable from their neurotypical peers, so people may get the impression they’re misbehaving and not having a meltdown. I don’t know if the woman had any experience as a therapist or an educator, but I was upset she felt she could dismiss our experiences with her announcement of disbelief.

It’s 2015 and it seems like everyone knows someone on the spectrum: a family member, a friend’s nephew or a neighbor’s child. There’s much more awareness. The objective now is acceptance. Many schools have implemented sensitivity training.

Hopefully, our society will better accept people with disabilities, and those with disabilities will be able to find their niche and a career that utilizes their strengths. Hopefully, this woman now knows autism is real.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? 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.

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How My Son’s Hunter Syndrome Makes Us View Time

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Tomorrow our baby D turns 1. That year flew by quicker than a hungry cheetah chasing a zebra!

Time is a funny thing. It’s different for us now. We don’t view time like most. Time is a tough pill to swallow.

We celebrate like all families do, we embrace the boys getting older, but when it comes to our son, Ethan, getting older, it’s different.

On one hand we are delighted. We do our “up your’s Hunter’s” dance, and we actually dance and sing it in the tone of “Happy Birthday!” On the other hand, late into the night, we talk about Ethan and how much Hunter syndrome has taken from him, us and his younger brothers.

It is sad. That’s the truth. No one wants to hear the truth. They want to hear about how great Ethan is doing, how happy he is and how great we all are for getting on with “things.” What choice do we have?

Time does not allow you to wallow. Time moves. Time pushes you, ready or not.

“Time heals all wounds.” For us, it doesn’t. We’ve known about Ethan’s syndrome since 2008, so that’s six years. We are not healed. We are not ready to deal with the harsh reality of Hunter syndrome. How can any parent be?

“Time stands still for no man.” Sadly that is true.

I remember writing a poem about Ethan. It was a way for me to talk about Hunter syndrome without opening my mouth. I still find it easier to type. It’s hard to tell the gods honest truth to a friend who just wants to hear that everything is OK. I cry too much when I talk frankly about Hunter’s.

My poem was basically about wanting to stop time. I still would like to stop time. I had written it, crumpled it and tossed it into my computer desk. A year ago, my brother A was moving. We were helping when I spotted a framed poem hanging on his bedroom wall. “What is that?” I was embarrassed and a little annoyed. “Yours. It’s beautiful. I hope you don’t mind. I saw it in your desk, years ago. I was afraid you’d throw it out, so I kept it,” he stammered. “Do you want it back?” He took it from the wall. “No, keep it.” The annoyance dissolved as I watched him carefully cover it up and place it on top of his box marked “memories.”

I appreciated that. I appreciated A could see the value of the poem. “If I could stop the time, I would.” He kissed my cheek as he left the room carrying far too many boxes.

We don’t talk about Hunter syndrome in too much detail, my family and I. My guess is it’s just too hard on them, but that day, among all of A’s childhood memories, I knew he understood how I really felt. We never spoke of the poem again. It has a spot in his sitting room wall now and that’s OK with me.

I value time. I value the time I spend with all my boys. I treasure the time we spend watching TV, dancing, singing, walking, running, playing… I treasure it all, like all parents.

Except for us, we know one of our boys won’t ever get to do any of the things we imagine for our children. In time, he will be unable to walk, in time he will be unable to eat, in time he will be unable to communicate, in time he will not recognize us, in time we will have to say goodbye.

That is Hunter syndrome. That is our reality.

I want to end this rather depressingly honest post on a positive note: time can do so much. Yes, yes it can.

Research and awareness is vital; there’s ongoing research and it’s successful. In time all those who qualify (who are deemed healthy enough and not too far into the regression stage of Hunter’s) might get the drug.

It is a waiting game.

We feel time is actually on our side. Ethan is doing OK. For a boy with the severe form of Hunter’s, at the age of 12, he is still talking (two- to three-word sentences), walking, playing and of course laughing. He is still here and with us.

We thank time for giving us him, for letting us still have him and for being good to us all.

Time is an amazing thing.

I still wish I could stop it or even pause it. I can’t.

Tomorrow is baby D’s very first birthday. We will take the time to enjoy it and watch our three boys enjoy it.

The here and now is all the time any of us are ever guaranteed. That’s how we view time in our little family.

Follow this journey on geraldinerenton.com.

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New TV Series Proves Students With Disabilities Aren’t So Different After All

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A new TV series is proving college students with disabilities aren’t so different from any other student.

The Unbreakables: Live and Love on Disability Campus” is part of the BBC’s “Defying the Label” TV series about what it’s like to be a young person with a disability in the U.K. The three-part documentary follows students who live at National Star College, a school for people with disabilities. Many students in the show are living away from home for the first time.

The first episode, which aired on Thursday, July 30, centered on Xenon, who uses a wheelchair, and his roommate, Bradley, who has cerebral palsy. Xenon and Bradley laugh together, study together and tease each other about romantic interests, all the while changing any preconceived notions that college students with disabilities are any different than college students without disabilities.

Watch a clip from the first episode below. (Note —includes semi-inappropriate language that may not be suitable for some audiences).

 

The second installment of “The Unbreakables” follows a group of students who are new at National Star, including a 20-year-old with cerebral palsy who wants to become a DJ. It airs on BBC Three on Thursday, August 6.

h/t Mirror

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When People Say Anxiety Is ‘All in Your Head,’ Show Them This

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When you tell people who have anxiety it’s “all in their head,” you aren’t exactly wrong — although what you’re implying certainly is.

Anxiety isn’t in someone’s head as in “made up” or “exaggerated,” but rather in the most literal way possible. It starts in your brain. A new video, released by Life Noggin, an animated and educational YouTube series, goes through the different types of anxiety disorders and gives some science behind why we experience anxiety in the first place.

So when someone tries to diminish anxiety because it’s in your head, you can send them this video and wholeheartedly agree.

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Hackers Stole Money a Little Girl Planned to Spend on Toys for Sick Kids

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Noelle Gregoire was devastated when she found out somebody had hacked her charity bank account and spent nearly all of the $2,600 she had raised, CBS Boston reported.

Noelle, 10, from Haverhill, Massachusetts, had raised the money through a GoFundMe page and a charity swim she did across a New Hampshire lake a few weeks ago. She planned to spend the money on toys for patients at Floating Hospital For Children at Tufts Medical Center. Noelle has gone to the hospital for frequent treatments for dysplastic spondylolisthesis, a rare spinal condition, since she was 5 years old.

When Noelle and her mother went to begin buying toys, they discovered someone had hacked the account, spending all but $7. Although the bank pledged to restore the funds, kind strangers came to the rescue. There was a sudden influx of donations to Noelle’s GoFundMe page — $3,000 in donations in less than 48 hours. The children at the hospital will be getting their toys after all.

“Some people are just rude but there are actually some nice people in the world,” Noelle told CBS Boston.

Get the full story from the video below: 

h/t Reddit Uplifting 

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5 Minority Mental Health Issues Everyone Should Understand

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To close out Minority Mental Health Awareness month, Dior Vargas, a Latina feminist and mental health activist, held an important Twitter chat on Friday.

Vargas is the founder of the People of Color & Mental Illness Photo Project, a series created to help people of color with mental illnesses know they’re not alone and discuss the unique issues people of color face in the mental health community. We learned a lot from both Vargas’ questions and the responses she received. Take a few minutes to educate yourself about minority mental health:

1. “What are some of the myths/misconceptions about mental health in minority communities?”

Answer: “We often frame mental health as personal or will power issue versus a health one. But that’s not unique to people of color.” — Nora Rahimian

Mental health knows no boundaries. Nearly one in five people live with a mental illness, according to the Substance Abuse and Mental Health Services Administration.

2. “What are the realities of living with a mental illness condition specifically for a person of color?” 

Answer: “Perception vs. Reality: We perceive seeking help as weakness. The REALITY is that it’s a sign of strength.” — Hispanic Serving Health Professions School

Only 41 percent of people with a mental illness seek help each year, according to Mental Health America. Finding help is a step in right direction. There is a wide variation of support and treatment. You can start by using a screening tool.

3. “What are some main concerns of these communities when it comes to mental health and getting mental health care?”

Answer: “Black teens are less likely than white teens to receive mental health treatment.” — National Network to Eliminate Disparities in Behavioral Health

While black teens are less likely to receive help, African Americans are 20 percent more likely to report having serious psychological distress than Non-Hispanic Whites, according to the U.S. Department of Health and Human Services, Office of Minority Health.

4. “What are some changes that are needed when it comes to the current mental health care system?”

Answer: “[There] needs to be more mental health practitioners period. Lack of access is still a huge concern in diverse communities.” — Prototypes

There is a lack of mental health services due to funding, absence of mental health from the public agenda and the current organization of mental health services, according to the World Health Organization. Only about 5.6 percent of the national healthcare spending is dedicated to mental health, according to the Health Affairs journal.

5. “What is your idea of a mental health utopia?”

Answer: “A world that has the proper resources for effective treatment that is affordable to the poor.” — Yukio Strachan

Although minorities face barrier when it comes to mental health, all populations seeking mental health services are affected by social stigmas. Anyone with a mental illness can face mistrust, fear of treatment and discrimination by individuals and institutions, according to “Mental Health: Culture, Race and Ethnicity, A Supplement to Mental Health: A Report of the Surgeon General.”

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