Why I’m Proud My Autistic Son Said ‘No’ Today

1k
1k
2

I’m so very proud of my son today.

He had an outing planned with a local Scouts group; it was to be the first time he would go on a trip with them, and he was excited but also anxious.

What would the other kids talk about? 

Would he have fun? 

Would they hold his hand on the roads on the way there? 

Would he be bored? 

Last night he had a bad attack of nerves but soldiered through, and woke up this morning indecisive as to whether he wanted to go or not.

We had breakfast and got dressed while he continued changing his mind back and forth. I said whatever he chose was fine and that I was proud of him for trying something new.

It became time to put his coat and hat on, and then he became distressed and announced firmly that no, he was not going.

And I am proud of him! 

We spoke about why it’s important to have been able to say he is not comfortable going, how it would have been worse to go and internalize the ensuing meltdown that occurred.

For a child to have that option, to choose whether to do something or not can mean so much. It can promote independence and freedom of thought, preference and strength of character. It’s not about upsetting others; it’s about being strong enough to care for themselves.

Was I disappointed he didn’t go? 

No.

Would it matter if I was? 

No.

It’s not about me; it’s about how he feels.

My son asked me just now after I read out what I had written, am I still proud of him? 

I replied, “Of course, it takes a strong person to admit something is not right for them, to not go with the flow because it’s ‘easier’ not to say anything.”

Proud doesn’t even cover it.

Too many times I’ve read despairing posts on Facebook:

1. Why won’t my child go to school? 

2. Why won’t they wear this outfit? 

3. Why are they so picky with food? 

My answers would be:

1. Something may not be going well at school and they don’t know how to tell you. Yes, your child’s school maybe “fully inclusive” with a million plans in place, but something is still not working for them. It may be too loud, too crowded or just may not be the right place.

2. This may be sensory issues. The texture of the fabric may overheat them and make them uncomfortable; it may even prove painful. Let your child pick clothes with you, feel the textures, and compare wool, cotton and corduroy. See what they like. If that means they go out dressed in a fancy dress occasionally because it feels best, is that such a bad thing? They are children once only; applaud and encourage their individuality.

3. The feel of the food in their mouth may feel repulsive, provoking the gag reflex. Would you want to eat something that tasted and indeed felt disgusting? I don’t think so. Ask your child’s doctor about vitamin options. Maybe blend fruit smoothies together to encourage a good diet.

For us, it’s not about having a compliant child; it’s about having a happy child who feels confident enough to change his mind occasionally. So what if you had planned a coffee with a friend while your child was out? Invite the friend over, get out some sensory play and relax!

1k
1k
2

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

When I Write About Parenting a Child With Autism for the Mainstream Media

233
233
5

I’m not entirely sure why I write about my personal experiences parenting a child with autism for the mainstream media – mostly I hope my own experiences may help someone else on their autism journey – and they won’t stumble through as I had done in the early days. Parenting is challenging, joyful, frustrating, heart-wrenching and rewarding all jumbled together. Making those experiences heard is also an important step toward wider acceptance of autism in the community at large.  

But what I’m never quite prepared for are the letters I get whenever I publish something about autism in the mainstream press.

Here are a few responses that never fail to happen:

1.  Someone writes to tell me vaccines cause autism.  

The study that kicked off this speculation was proven to rely on falsified data, and the author had financial motives for making up his findings. The journal retracted the study years ago. If that’s not enough to placate, there have been dozens of significant studies trying to establish such a link just in case, and all of them came to the same conclusion: there’s no relationship between autism and childhood vaccinations. End of.

2.  Someone writes to tell me they have the “cure” for autism.

The people who send me these kinds of letters are either snake oil salesmen preying on parents purely for monetary gain but also people who really think they’ve single handedly stumbled on the “cure.” In either case, save your breath. There’s no known “cure” for autism. Yes, many studies have shown there are some excellent therapies (behavior, speech, occupational, sensory, drug, diet) that may help enhance certain abilities or address certain challenges in some individuals with autism.

But we’ll all be better off if we stop seeing the individual with autism as “sick” or “broken” and in need of a “cure,” and instead provide them with the supports they need to thrive in the community.

3.  Someone writes to tell me I’ve caused my son’s autism.  

Yes, really. I like to call them jackasses, but I believe other journalists call them trolls. Turns out, trolls don’t just save their bullsh*t for political commentators but share their misery with parenting columnists too.  

I’ve been told my son has autism because: I fed him formula as a baby (no), I was on anti-depressants while pregnant (nope), I fed him genetically engineered foods (sigh) and, of course, because I had him vaccinated (of course I did – read #1). One special jackass told me it was karma.

4. Someone offers me money. 

See — it’s not all bad. Strangers also offer to send me money to help me parent my son with autism. It’s just the sweetest gesture and my faith in humanity is always restored by these letters. I thank them but always kindly decline and recommend they give to a local autism charity instead. There are many autism families that are in far greater need than myself (raising a child is expensive – raising a child with autism is astronomical) and the frontline autism charities are the best at putting resources where they are needed most.  

5.  Someone offers my son gifts.

Many, many readers want to send my son gifts. It happens every time I write. It is such a beautiful gesture, and I am touched by every offer. But again – for reasons of protecting privacy and because my son is already spoiled rotten, I always say no. Again, I recommend they donate to an autism organization, and I think many of them actually do this.

People, it turns out, can be very kind.

I did accept one time: when the city transportation office offered a tour of the local bus facilities after a story about how much my son loves city buses (he memorizes the routes and “articulated bus” was one of his first toddler phrases). They gave us a half-day tour and a goodie basket full of bus-related items. My son still talks about it today.

None of these responses ever stop me from writing. In fact, the first few make it clear how badly I need to keep writing to combat the misinformation that’s still floating around out there. But the best news? The kind gestures always outnumber the jackasses.

233
233
5
TOPICS
, Contributor list
JOIN THE CONVERSATION

3 Tips for Dealing With Roommates When You Have Autism

37
37
0

Chances are, at some point in your life you are going to live with a roommate. If you have autism, here some tips on making it the best experience possible.

If you have any ideas for videos you’d like to see, please send me an e-mail to [email protected].

37
37
0
TOPICS
, Video
JOIN THE CONVERSATION

Barber Launches ‘Superhero’ Group to Help Give Kids With Autism Haircuts

4k
4k
3

You might remember our story about hairdresser James Williams, who was photographed getting on the floor to help a boy with autism feel comfortable during a haircut in November. Williams, based in Wales, wrote on his Facebook page that he was merely trying to figure out how to cut his young client’s hair without upsetting him. The story went viral, and since then Williams has been approached by a number of parents of kids on the spectrum looking for help with haircuts.

12191064_10208121043806464_3190627190150850270_n
Image courtesy of James Williams

Williams told The Mighty he opens his shop every Sunday for children with autism, but he wanted to do more, so he teamed up with several other barbers in the U.K. to launch the Autism Barbers Assemble group. Their mission is simple. “We go by the ‘ABA TEAM’ as superhero barbers to help children on the autism spectrum get past the fear of a haircut,” Williams told The Mighty.

Autism Barbers Assemble
Image courtesy of James Williams

So how does Williams get the job done? He says it’s a simply a combination of being patient and getting to know his customers. Last week he posted a video with Seb, a boy with autism. “It’s his first visit to my barbershop and this is where I will hope to get a breakthrough and show how I work with children on the spectrum,” Williams wrote on his Jim The Trim Facebook page.

First session on live stream with Seb who is on the autistic spectrum, it’s his first visit to my barbershop and this is where I will hope to get a breakthrough and show how I work with children on the spectrum and to show how they respond and act 🙂 Davie Walker Chris Moon Anthony Copeland Rhys GreenJac Ludlow Pat BarryTyra Leanne Grundy Eric Begg Alan Beak Lynndy Rolfe Scott Michaels Gareth D Clark Srb Gary Cox Srb

Posted by James Williams on Sunday, February 28, 2016

 

Autism Barbers Assemble will host their first event in Paisley, Scotland, and they are eventually hoping to bring their team to the United States.

4k
4k
3

RELATED VIDEOS

TOPICS
, ,
JOIN THE CONVERSATION

Pennsylvania District Judges Take Course to Better Serve Autistic Defendants

673
673
3

District Judge Tom Swan, of Allegheny County, Pennsylvania, is one of approximately 1,000 district judges in the state now required to take a course in helping defendants with special needs in their courtrooms. Swan has a 19-year-old son with autism, and he explained to the Pittsburgh Tribune‑Review why it’s so important to help professionals in law enforcement and the judiciary system understand the behavior and thought processing of all people.

“If you read [my son] his Miranda rights and asked him if he understood those rights, he would say yes,” Swan said. “But if you asked him what it means, what those rights mean, he couldn’t tell you.”

The Pennsylvania Judicial Code requires every magisterial district judge to complete a 32-hour continuing education program each year, and thanks to an amendment passed in July, the program now includes courses in “identification and availability of diversionary options” for individuals with mental illness, intellectual disabilities or autism, reported the Autism Society of Pittsburgh.

District judge Tom Swan and his autistic 19-year-old son, Kevin, inside the courtroom of his West Deer magistrate's office on Friday, Feb. 12, 2016.
District Judge Tom Swan and his son, Kevin, who has autism. (Photo courtesy of Eric Felack / TribLive.com)

The Autism Society of Pittsburgh teamed up with Duquesne University’s department of counseling, psychology and special education to provide training, which involves a lecture and video.

Dan Torisky, president of the Autism Society of Pittsburgh (and former president of the Autism Society of America), told The Mighty that to his knowledge, this program is the first of its kind in the United States. He explained that it began as a police officer training program, and then moved to cover the entire justice system in the state.

Tammy Hughes, professor and chairwoman of Duquesne University’s department of counseling, psychology and special education, explained to the Pittsburgh Tribune‑Review how such training may help a judge recognize that someone who might be perceived as “noncompliant” for plugging his ears or closing his eyes may actually be experiencing sensory overload.

When asked about their expansion, Torisky told The Mighty, “We are currently preparing courses for defense attorneys, public defenders, prosecutors, higher level judges, and, ultimately, an alternative sentencing judges’ desk book.”

This is the most meaningful work that we have done,” Heidi Buckley, vice president and director of community relations at the Autism Society of Pittsburgh told the Pittsburgh Tribune‑Review. “It’s so practical, and it could be life-changing.”

673
673
3
TOPICS
JOIN THE CONVERSATION

Autistic Brothers Create Device Police Can Use to ID People on the Spectrum

4k
4k
7

Brad Benjamin, 27, and his brother Kenny Benjamin, 26, have autism spectrum disorder, and they wanted to help others on the spectrum stay safe should they come into contact with first responders during a stressful situation. With help from their parents and the Prince George’s County Police Department in Maryland, the young men have launched the National Autism Registry, which works specifically with first responders.

“The reason why we are excited about this is because this way people would never fear… people with Asperger’s and autism anymore,” Kenny Benjamin told local news station WJLA. “People fear what they don’t understand about us autistic people.”

Registry members receive a wearable USB device with a puzzle piece inside a yield sign, which gives first responders information about the person they’re helping. The brothers showed TV crews a plastic bracelet and a more sensory-friendly version, in which the USB device is embedded in a sweatband and worn around the wrist.

“We are trying to give the officers a heads up on what they are dealing with and train them on how they can deal with it,” mother Joyce Benjamin told WJLA. “My oldest, if he gets anxious, he may get combative just out of fear.”

 

The Benjamins met with Prince George’s County Police Chief Hank Stawinski this week; the department is the first to start implementing the program. Neighboring Maryland counties, including Calvert, Charles, St. Mary’s, Talbot and Queen Anne’s have agreed to use the program, and all parties involved hope police divisions across over the country will join them.

“Having that officer in a position to know in advance that they are going to have a difference perspective on things than some other folks, that helps,” Prince George’s County Police Chief Hank Stawinski added. “And at the end of the day what’s important is that everyone is safer.”

4k
4k
7
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.