Autism CARES Act Passed By Congress; Bill To Be Signed By President

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Autism CARES Act Passed By Congress; Bill To Be Signed By President


September 19, 2019


Menendez, Enzi Applaud Final Passage of Autism CARES to Continue Critical Research, Education, Supports

National autism rate: 1 in 59 American children and rising

NJ’s highest rate in the nation now 1 in 34

WASHINGTON, D.C. – U.S. Senators Bob Menendez (D-N.J.) and Mike Enzi (R-Wyo.), senior members of the Senate Finance Committee that sets national health policy, today applauded the unanimous, final passage of the Autism Coordination, Accountability, Research, Education and Support (CARES) Act of 2019 that, for the first time, considers the needs of individuals with autism spectrum disorder (ASD) well into adulthood and “across [their] lifetime.”  The bill now heads to the President for his signature. 

“Our legislation marks a leap forward in federal autism policy by recognizing the needs to invest in research to address an individual’s evolving needs across a lifespan,” said Sen. Menendez.  “I want to thank the families and advocates who have stood with us and inspired this fight to ensure autistic Americans thrive throughout their lives.  With autism’s growing prevalence in New Jersey and across the nation, the investment we make through Autism CARES is more critical than ever. This is about empowerment. This is about dignity. This is about compassion.  This is about ensuring that every individual with ASD and others with intellectual and developmental disabilities are able to reach their God-given potential.”

“I am glad the Senate unanimously reauthorized the Autism CARES Act to promote research, education and awareness into autism spectrum disorder and other developmental disabilities,” said Sen. Enzi. “This successful program helps us better understand causes and symptoms of autism spectrum disorder and improve the lives of millions of people affected by it.” 

One in 59 children nationwide have ASD, according to the latest study by the Centers for Disease Control and Prevention (CDC) released last year, a jump of 15% since the previous study was conducted in 2016 and up from one in 166 in 2005.  New Jersey has the highest rate of autism, with one in 34 children identified with ASD 

Autism CARES 2019 builds upon the current, Menendez-authored law, which expires in September, and shapes federal autism policy and investment in research, early detection, and research to develop new treatments and therapies for those with ASD and other developmental disabilities. 

The bipartisan Autism CARES 2019 affirms Congress’ commitment to individuals with autism spectrum disorder and other intellectual and developmental disabilities, and their families.  In addition to reauthorizing existing federal autism programs through 2024, the legislation strengthens those programs by adding the phrase “across the lifespan” where appropriate to ensure they can address the needs of individuals with ASD and other intellectual and developmental disabilities throughout all stages of life.  The provision builds upon key elements of Sen. Menendez’s Assistance in Gaining Experience, Independence and Navigation (AGE-IN) Act that were incorporated in the 2014 law to address the needs of youth and young adults as they transition out of school-based support to independent adulthood. 

Autism CARES 2019 also:

·         Authorizes research under the National Institutes of Health (NIH) to address the entire scope of autism spectrum disorder;

·         Designates regional centers of excellence for ASD research and epidemiology

·         Directs activities to increase public awareness of autism, improve the ability of health providers to use evidence-based interventions, and increase early screening and detection

·         Authorizes $23.1 million to the CDC for developmental disability surveillance and research;

·         Authorizes $50.6 million to the Health Resources and Services Administration (HRSA) for education, early detection, and intervention, and allows HRSA to prioritize new grant applicants in rural or underserved areas;

·         Authorizes $296 million for the National Institutes of Health (NIH) for research;

·         Requires the Department of Health and Human Services (HHS) to provide a report to Congress on the health and well-being of individuals of all ages with ASD and other developmental disabilities.

In February, Sen. Menendez visited Quest Autism Programs in Midland Park, N.J., a community-based day program for adults with autism, to announce introduction of Autism CARES 2019.  During Autism Awareness Month in April, Sen. Menendez toured LifeTown, a state-of-the-art, 53,000-square-foot, educational, recreational and therapeutic facility in Livingston, N.J., serving the needs of individuals of all ages with ASD, to push for the bill’s passage.

“Autism New Jersey is thrilled to see the results of Senator Menendez’s leadership on behalf of the autism community here in New Jersey and across the nation,” noted Suzanne Buchanan, Autism New Jersey’s executive director.  “The reauthorization of the Autism CARES Act will provide vital federal support to monitor prevalence, train healthcare professionals, promote collaboration among federal agencies, and address individuals’ and families’ challenges across the lifespan.”

“I’m happy that Autism CARES is one step closer to being reauthorized. I commend Senator Menendez for advocating on behalf of children and adults living with autism and thank him for getting this passed in the Senate,” said Dr. Bridget Taylor, executive director of Alpine Learning Group. “With the rate of children identified as having autism in New Jersey as one in 34, it is essential that Autism CARES be reauthorized. Children with autism grow up to be adults with autism and services and research for this population has been lacking. Inclusion of ‘lifelong’ into the Autism CARES will prompt much needed research and clinical practice for this population.”

“The SPAN Parent Advocacy Network (SPAN), New Jersey’s one-stop for families of children with ASD and other special needs, is excited about the Senate passage of the Autism CARES Act this week.  We are particularly appreciative of the new requirements for a report on the health and well-being of individuals with autism, greater emphasis on research on services and supports across the lifespan, and the increase in the minimum number of individuals with ASD and parents/guardians on the IACC from two to three each.  People with disabilities and their families have the greatest commitment to improving services to and outcomes for their families and their peers, and thus should be at the center of research and policy regarding their lives,” said Diana Autin, executive co-director of SPAN Parent Advocacy Network. “As the state with one of, if not the highest, rates of ASD in the country, we will benefit from these improvements to the law and its implementation, and thank Senator Menendez for his tireless advocacy to ensure continued funding for this critical legislation.” 

“Quest Autism Programs is thrilled to hear of the approval of the re-authorization of the Autism CARES Act in the Senate this week, which will help bring the much needed resources and awareness to the rapidly growing adult population of individuals with ASD,” said Carrie Hennessy, clinical director of Quest Autism Programs. “It is encouraging to see the attention and efforts given to those with special needs across their lifespan, due in large part to the hard work and advocacy of Senator Menendez, the compassionate professionals in this field, and the devoted families of the children and adults that this will benefit.”

“We are ecstatic about the passage of the Autism CARES Act of 2019 as it’s a positive direction in legislation that has been in a constant upward trajectory since its beginning in 2006.  This is a monumental day for our entire community but especially adults with autism with the emphasis on ‘across the lifespan,’ in the legislation.  And I appreciate Senator Menendez’s advocacy on behalf of the autism community and working so hard to ensure the passage of this vital piece of legislation. With this we are making it known that our children with autism will grow up to be adults with autism and we need to be ready for them with supports,” Kerry Magro, a professional speaker, author and leading advocate, said. “I know this feeling oh too well as an adult on the spectrum who grew up with challenges during my adolescence such as being nonverbal until two-and-a-half. I applaud the bipartisan support along with all our community who advocated to make this possible.”

“Senator Menendez has been a strong advocate for the autism community and I appreciate his hard work in passing this critical piece of legislation,” said Toni Pergolin, President and CEO of Bancroft.  “In a state with the highest rate of autism, this bill will benefit autism programs across Southern New Jersey.  I’m happy that, for the first time, there is a focus on people with autism across their lifetime. It’s vital that the children and adults we help continue to receive the care and tools we provide so they can go on to live full, healthy, and happy lives. 

“Spectrum360 applauds the passage of the Autism CARES Act.  It will finally provide critically needed funding for adult services to develop an essential continuum of program options to meet the unique needs of adults on the autism spectrum,” said Dr. Bruce Ettinger, executive director of Spectrum360. “It is essential that funding for transition and habilitation as well as supported employment services are included in this continuum.  I thank Senator Menendez for ensuring the passage of this critical bill and working on behalf of the autism community.”

“We are excited that Congress is reenacting the Autism CARES Act, and especially appreciate and look forward to the implementation of a new provision extending the Autism CARES Act to adult services,” said Jonah Zimiles, an autism parent and co-founder of [words] Bookstore, an independent bookstore in Maplewood, N.J., that provides employment and vocational training for individuals with autism.  “We are grateful to Senator Menendez for his extraordinary and consistent leadership on behalf of the autism community in New Jersey and throughout the United States.”

“We are so gratified to see this important piece of legislation reauthorized and thankful to Sen. Menendez for his leadership to get this accomplished,” said Amalia Duarte, public affairs director for ECLC of New Jersey.  “It is critical to ensure the nearly 500 adults in ECLC of New Jersey’s employment and day programs—and all adults with special needs across the county—continue to receive services for as long as needed.

Blind engineer builds a SMART cane that has Google Maps, Bluetooth, and a sensory device

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In today’s age of advance technology, a lot of devices, gadgets, and programs are built to make our lives easier and more convenient. While the more recent innovations were designed for entertainment, some companies are taking technology to the next level by incorporating a high level of help and hopefully, to make a difference to the lives of people who need it the most.

Unfortunately I cannot name a single city as a perfectly disabled-friendly city that is why we are trying to provide this independency for visually impaired people” shared Ceylan on CNN.

Blind engineer puts Google maps in a smart cane.
WeWALK Facebook Page

The WeWALK smart cane was born from a visually impaired engineer named Kursat Ceylan. He is also the CEO and co-founder of a non-profit called the Young Guru Academy (YGA), the one responsible for making WeWALK come to life. As someone who faces the daily challenges of being blind, Kursat Ceylan knew the limitations of the current technology that people like him have to make do of. Knowing this, he created the WeWALK in hopes of changing the lives of the blind.

This innovative cane includes a built-in speakers, voice assistance, Google Maps, a Bluetooth system that makes syncing to other devices possible, and high-end sensors that alerts the user through vibrations when above chest level obstacles are within proximity—something a regular cane cannot provide.

Google maps helps people with their smart cane.
WeWALK Facebook Page

In these days we are talking about flying cars, but these people have been using just a plain stick,” he explained to CNN. “As a blind person, when I am at the Metro station I don’t know which is my exit… I don’t know which bus is approaching… which stores are around me. That kind of information can be provided with the WeWalk.”

One of Kursat Ceylan’s goal in making the WeWALK is to make the social participation of people like him full, and easier. To him, the WeWALK was made to “support the visually impaired in their full participation into social life.” This device is not completely new, but the fact that he was able to utlize and incorporate existing technologies such as voice assistance, Google Maps, and Bluetooth syncronization, makes it a completely new idea.

WeWALK Facebook Page

A lot of people have expressed their joy and excitement for having this kind of device available for the visually impaired.

Well done Ceylan! This will enhance lives of of the visually impaired by so much!” Julia Teng Roo Seen shared.

Just add a taser and it’s perfect for all situations!” Bill Ward joked.

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New Study Finds Autistic Women More Likely to Attempt Suicide

Written by: Renee Fabian

If you experience suicidal thoughts or have lost someone to suicide, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741741.

A new study published in the journal Psychological Medicine found autistic women are more likely to attempt suicide and siblings of autistic people are also at higher risk, highlighting the need for suicide prevention efforts across the autism community.

The study, led by researchers in Sweden, examined suicide data, including attempts and people who died by suicide, in more than 54,000 people on the spectrum between 1987 and 2013, and matched them with siblings, half siblings and cousins. These participants were then compared to a control group of neurotypical people. Led by researcher Tatja Hirvikoski, study results showed autistic people across the board are four times as likely to attempt suicide compared to the neurotypical population, and eight times as likely to die by suicide.

Because of the large sample size in this study, Hirvikoski and her colleagues were able to gain additional insight. Autistic women were more likely to have suicidal thoughts or attempt suicide compared to males. This mimics trends in the neurotypical population — women are more likely than men to attempt suicide (though men die by suicide at higher rates).

For autistic women who also had an attention-deficit/hyperactivity disorder (ADHD)diagnosis, their risk for attempting suicide nearly doubled. Approximately one in five autistic women with ADHD attempted suicide compared to 1 in 11 autistic men with ADHD. Autistic women with an intellectual disability were also more likely to attempt suicide — 1 in 13 women compared to 1 in 20 men.

“This indicates a risk of suicide attempts that is 10 times higher than among women in the general population,” lead author Hirvikoski told Healthcare-In-Europe. “In addition, the risk of completed suicide was even higher among these women, so this is a very worrying result.”

The current study also looked at suicide risk for the relatives of autistic people compared to neurotypical people to investigate if there is a genetic connection between suicidality and autism. Though no conclusion can definitively be drawn from this data, researchers did find siblings of autistic people were more likely to attempt suicide compared to the siblings of neurotypical people. In addition, half-siblings and cousins were also at a slightly higher risk when their family member was on the spectrum.

Previous studies on the risk of suicide among those on the spectrum also showed an increased risk, with autistic people at approximately 10 times the risk of making a suicide attempt. However, previous research has been inconclusive, especially in context with a rising suicide rate among all populations. This new study further highlights the need for more suicide prevention resources and mental health care in the autism community. The Autism and Suicide committee of The American Association of Suicidology and Common Ground currently offer a short guide that can help crisis workers support autistic callers/texters.

“Our analyses showed that the risk of suicide attempts and suicides was far higher among individuals with autism,” study author Henrik Larsson told Healthcare-In-Europe. “The results give us valuable information about risk factors and guidance for clinical activities.”

If you or someone you know needs help, visit our suicide prevention resources. If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or reach the Crisis Text Line by texting “START” to 741741.



August 10, 2019 (

Catie and I were walking in the galleria last week. We walked past 3 young boys who were happily killing time on a summer afternoon.They looked to be around Brian’s age and I stopped for a minute to watch them. They had baseball caps and t-shirts on, the kind Brian always wears and I felt this wave go through me almost making me a tiny bit nauseas. I asked Catie if she thought they were Brian’s age. We both agreed that they probably were. Then I asked her what she thought Brian would be like if his genetic code was different. I ask myself this question all the time. When I get in my moods and wallow for a bit I let my imagination wander. I wonder if I would be caught up in him being “popular”. Not a word I like to use but let’s face it, it’s a word used quite a bit in society, so I’m not going to tiptoe around what everyone secretly (some not so secretly) wants for their kids. I wonder if I would be caught up in him being a master of sports or a master in the classroom. I wonder if he would have a girlfriend and if our house would’ve been a place his peers would come to hang out. I wonder what it would be like to be a mom that thinks about these things. I wonder what it would be like really feeling a part of the community in which I live.

I wonder. I cry. I stop. I get myself together. And just like that I’m back to reality. I’ve earned those moments.

Although I’ve narrowed my dreams for Brian they don’t stray from the fundamental wishes I had for him the moment he first was placed in my arms on that winter night 15 years ago. I wished he would be healthy and reach his God-given potential. I wished he would be a productive member of society and make meaningful contributions to the world we live in and most importantly, above all, live a peaceful life surrounded by love and friendship. Much has been taken from Brian but I realize we can still do this. It will look different than I expected and I don’t know what the productive piece is going to look like but we will commit to making something work for him.

So this brings me to a serious question that I think I know the answer to. Will I ever stop looking at Brian’s peers as I scroll through facebook watching some fun outing take place without a pain in my heart? Simply put…….will I ever stop grieving? Some might think the word grief is not the proper word to describe the sense of loss I feel but I think it is. That doesn’t mean I am not thankful and count every blessing I have but when you watch the daily struggles you would have to be made of stone to not feel the loss.

Behind these worries with which I’ve learned to cope is a much greater fear. A fear that makes me breathless and it makes me avoid thinking of the future. Ironically, as I am writing this sitting outside with my husband on the most beautiful night of the summer our wedding song plays on spotify. Which brings into exact focus my greatest fear: who will love Brian like me and my husband when we are gone?

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Timothy Edward Levine Gets One More Opportunity to See The “Love of His Life” and Favorite Singer, Crystal Gayle, Perform!

Timothy Edward Levine had a rough beginning in life. A diaphragmatic hernia, a birth defect, caused his lungs to be underdeveloped. Soon after his birth on December 11, 1983, Timmy was life-flighted for emergency surgery from a hospital near Spring, TX to Texas Children’s Hospital in Houston’s Medical Center. The surgery was a success. However, for the next several years, Timmy would wake up in the middle of the night screaming. His parents thought that he was having nightmares from memories of his traumatic early beginnings.

They would hold Timmy and rub his back, but the only thing that soothed him was when they played the music of Crystal Gayle. When Timmy’s mother, Margaret, was pregnant with him, she frequently listened to Crystal Gayle’s music. Apparently, Timmy listened to her music, too, “in utero”. Until he was born, nothing traumatic had happened to him. Perhaps hearing Crystal’s music innately transported him back to a time where he felt the most safe and secure.

In 1987, Timmy was diagnosed with autism, and it became very clear why Crystal Gayle’s music was very much an important part of his life. Timmy’s father, Steve, explained, “Autistic individuals depend upon rituals, routines, and schedules to make sense of their life, and Crystal Gayle’s music was part of Timmy’s daily routine and ritual.”

Once Steve and Margaret understood how important Gayle’s music was to Timmy, they made sure that he always had new CD’s, tapes, and videos of her music. Sometimes, Timmy would turn off the sound of the video and turn up the volume of a CD and listen to a completely different song than what was on the video. Steve believes that in Timmy’s mind, he has “two for one” because he knows exactly what she is singing in the video and he’s hearing her voice on the CD. Steve says, “I guess he thinks it’s like Crystal in stereo.”

In 1987, the Levine’s heard that Gayle would be performing at a conference they were going to attend for the National Apartment Association. Steve wrote a long letter to the booking agent of the association to give to Gayle’s manager about what a big “little” fan 4-year-old Timmy was.

Steve wrote, “I’m sure she has a lot of fans who love her music, but for one in particular, my son Timmy, it’s part of his daily life and has a calming effect on him when he is upset. He listens to it every single day.”

In the letter, Steve asked if he and his wife could visit with Crystal after her performance. Their request was granted. At the end of the performance, the Levine’s were ushered to the end of a very long line of National Apartment Association dignitaries. A gentleman by the name of Bill Gatzimos was asking for them. He said that, if they would wait for everyone to leave, he and Gayle would sit and talk with them about Timmy. It turned out that not only was Gatzimos Crystal’s manager. He was her husband too! The four of them spent at least 45 minutes talking with each other about children, autism, and Timmy.

At that concert, Steve bought Timmy a Crystal tour shirt, and Timmy wore it as a nightshirt for many years until he eventually outgrew it. Fast forward 20 years later to December 2007. Steve (now divorced and remarried) phoned Margaret to ask her what she thought would be a good birthday present for Timmy. Margaret replied that Timmy would probably enjoy a new Crystal tour shirt.

Steve went online to order a tour shirt, but the website had a glitch and wouldn’t process the payment. Out of desperation, Steve contacted Gayle’s office in Nashville and asked to speak to Bill Gatzimos because Timmy’s birthday was rapidly approaching. Bill was very accommodating and said he would be happy to help with the shirt. He added, “By the way, did you know that Crystal will be performing near Houston at The Stafford Center the first Saturday night in January, and I think the tickets go on sale tomorrow?”

The next morning, Steve rushed over to the Stafford Center and was the first person there. He was able to purchase six front row center tickets, so that he could take his new wife, Barbara, and Timmy to see Crystal. The night arrived, and Steve worried that Timmy would not want to sit for an entire concert. Those fears were laid to rest as soon as Crystal came out on the stage. Timmy was mesmerized by Crystal. It was an amazing experience to watch Timmy’s reaction when he first saw her in person. Being autistic, he could not express it in words. But, the look on his face said everything.

Timmy was sitting in between Steve and Barbara. He would repeatedly look up at Crystal who was on stage just a few feet in front of him, and then look back at Steve and Barbara as if to say, “Look, that’s Crystal in real life, right in front of me. And, she’s singing just to me!” Throughout the concert he clapped his hands and stomped his feet with the music as he gazed at Crystal, never once trying to get out of his seat.

Crystal, who had been told where Timmy would be sitting and had received a picture of him from Steve, kept winking and smiling at Timmy throughout the evening. Indeed, it did look like it was a concert just for Tim. At the end, Timmy handed a single rose to Crystal purchased by his Aunt Tracey for the occasion. The gesture truly impacted Crystal. The impact could be seen in her eyes, the expression on her face, and how she put her hand to her heart.

After the concert, Timmy and his family were escorted to an area where they waited for Crystal to come out. She autographed Timmy’s shirt and CD’s and took pictures with him. Steve later had a special picture of Crystal and Tim enlarged. He called Bill Gatzimos to see if Crystal would be willing to autograph it and send it back to him. Bill put Steve on hold for a moment. He came back and said, “Only if Tim will autograph a picture for her.”

Steve had all of the autographed memorabilia including the tickets, tour shirt, and photograph framed. It all now hangs prominently on Timmy’s bedroom wall in his group home.

Fast forward, again, to July 2010. Three years have passed since this “chance of a lifetime” for one special fan of Crystal Gayle. Recently, Steve and Barbara Levine received a phone call from their good friends Steve and Ann Magoon. Magoon is a member of the Rotary Club of Fort Bend County, which is part of Rotary International–the largest community service organization in the world. Magoon recalled a story the Levine’s shared at a dinner party the year before about how Timmy loved Crystal Gayle.

He then elaborated that his Rotary Club always supports Wharton Junior College events. He went on to say that there was going to be a fundraiser for the college, and Gayle would be performing. He continued and said his Rotary Club had a table. He wanted to give their tickets to Timmy and Steve, so they could go see Crystal in person once again.

Steve and Barbara were thrilled by this gesture. The Magoons are also active with the Special Olympics, so they recognized that the concert would be a “Second in a Lifetime” event for Timmy.

Steve Levine sums it up, “I told this to Tim, and he is so excited. Thanks to the Magoons and Rotary Club of Fort Bend County, I was able to give my son a second ‘chance of a lifetime’ gift!” With few words, Tim expressed how he felt when he found out by excitedly saying, “Crystal, yes!”

Tim has had several opportunities since then to see Crystal perform live in the last few years. Most recently, he saw her perform on April 13th of this year at Dosey Does in The Woodlands, TX. Each time he sees her perform, she smiles and winks at him in the audience. She usually dedicates one of Timmy’s favorite tunes to him (“Rocky Top”) and always treats him as her VIP.

Obviously, Tim and Crystal are “Big Fans” of each other!

Mindful of New Accomplishments?

Mindful of New Accomplishments?

Each time our kids do something new for the first time, do we truly notice?

Recently, we were in the car on our way to before-school choir practice.

Out of the blue, John started playing with his shirt cuffs, buttoning them for the first time.

Then he said, pointing to a woman walking on the sidewalk, “that’s my teacher…, that someone else’s teacher.”

Another morning, he said from under the blanket while still in bed, “I am practicing spitting”.

That little sentence might be nothing to some moms, or even receive a scolding.

But you and I both know that any new joint-attention discussion on oral sensory challenges overcome is to be celebrated.

At our house, we are facing braces soon.

So when he recently rolled down the car window and spit out, my first thought wasn’t “bad manners”.

It was instead a hallelujah for mouth manipulation moving forward.

Let us pay attention.

Be mindful, tell your heart to sing for these joys of new things.

That feeling of accomplishment is something our kids deserve to absorb.

As parents, we are always trying to figure out this intrinsic motivation thing.

I have learned the hard way that the better I back off and zip it,  the better he moves forward.

It’s against our therapy-parent instincts, to let our kids feel the natural and unintended consequences of their own decisions.

New risks for our kids. New opportunities for them to build those vital long-term life habits and neural pathways.

New ways we must learn to let go and do less for them.

And then observe.

Celebrate quietly on the inside, because we can distract them from the experimenting they need to make progress.

Peace be with us,


Gayle Y. Fisher, M.Ed., Ed.Tech.

Improving the World of Learning Differences


To the Suicidal Mama Fighting to Stay Alive for Her Kids

Sad crying daughter hugging her mother with sad face on dark shadows background


If you experience suicidal thoughts, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741741.


Fellow Mama,

I see you lying there in bed, trying to will yourself to get up. I know some part of you might wish you hadn’t woken up this morning – that you could fade away into nothingness because it seems a hell of a lot better than dealing with the demons you fight off daily in your head. I recognize that question in your eyes: “Is this life really worth all the effort?”

And I see the moment when it all rushes back to you, when you remember why you keep fighting. I watch as you summon all your strength to push yourself out of bed because the baby is crying and the preschooler needs breakfast and you know you are needed.

I feel your pain as you hold that precious baby and watch that “big boy” eat breakfast and wonder what you ever did to deserve such a gift and simultaneously hating yourself for ever wanting to disappear. The love you feel wells in equal proportion to your guilt and you can’t decide if your tears are ones of joy and thanksgiving or shame and self-hatred.

I witness you fight through your day, each action a tremendous victory. It’s far from perfect, but it doesn’t matter because you’re there for another day. You show up – whether it’s at work, at home, at school – you show up for another day. You do what you have to do to survive. Sure, the kids will eat pop tarts in the car for dinner and you haven’t showered in four days and you’re living on a diet of drive thru coffee and your kid’s left-overs, but none of that matters because you’re still here. You’re still fighting — despite everything.

I see you, mama, fighting against all odds because your children need you. I see you struggle and I see you persevere because there is nothing more powerful than your will to protect your kids. They don’t know it yet, but their mom is a warrior, a queen, a saint, a testament to the unyielding power of love.

Yes, people may judge you because you haven’t changed your clothes in three days or they hear you crying to yourself in the bathroom stall or they disagree with the way you parent your kids, but I’m here to tell you, none of that matters. It doesn’t matter because you showed up and you loved your kids and that’s enough. Let that be enough.


A Mama Just Like You

Why I Call Myself an Autistic Mom

One mother reflects on what autism means for her and her kids

Editor’s note: ParentMap publishes articles, op-eds and essays by people of all experiences and from all walks of life. The opinions expressed in their articles are their own and are not endorsed by ParentMap.

I was in my late 30s when I realized I was an autistic mom of three. My then 2-year-old daughter and I were diagnosed with autism spectrum disorder (ASD) on the same day. I spent hundreds of hours doing medical research to figure out what was ailing her; I knew the doctors were wrong when they said she had just a language delay. Eventually, I came to the conclusion that not only was she autistic — I was, too.

I had to fight for our diagnoses because girls and women are often overlooked for an ASD diagnosis, which is typically thought of as a male disorder. According to the Centers for Disease Control and Prevention, only one girl is diagnosed with ASD for every 4.5 boys. I was lucky to find a clinical psychologist familiar with the gender differences with autism to secure both of our diagnoses. One year later, my 2-year-old son was diagnosed too. (My oldest daughter doesn’t have an ASD diagnosis.)

Getting myself and my kids diagnosed was life changing, but not earth shattering. I had spent my whole life struggling to hide my autism, although I didn’t know that’s what I was doing at the time. Knowing that my kids and I are autistic means that we can get the support we need.

But being autistic isn’t just a medical diagnosis for me: It’s an integral part of my identity. Even though I couldn’t put a name to it, I always knew growing up that I was different. The way I experience the world is through an autistic lens. I don’t know what it’s like not to be autistic.

The way I experience the world is through an autistic lens.

I can confidently say that I have accomplished a lot because I’m autistic, not in spite of it. I have my doctorate in English because literature is one of my special interests or areas of intense focus. My memories are stored like videos with rich sensory details, which help me write vivid scenes as an autistic writer. Having first-hand knowledge of what it’s like to be autistic makes me a better mom for my autistic kids.

But I also think of myself as a mom with autism. This is the person-first language that medical professionals often use because ASD is after all a medical diagnosis. I would be lying if I didn’t admit the day-to-day struggles I go through and watch my kids go through. When I’m in the middle of an autistic meltdown — an uncontrollable crying fit that makes me feel like my head is going to explode — I think of myself as a mom with autism. I can only imagine what it must feel like for my kids.

I would be lying if I didn’t admit the day-to-day struggles I go through and watch my kids go through.

As a writer, I’ve found that some editors revise my work so that person-first language is used to refer to me and my kids, while others keep the identity-first language that I write in my essays. For Glamour, I wrote my own titles:  “I’m an Autistic Woman, and This is How I Navigate the Workplace” and “I’m an Autistic Woman, and Bones is the Only Character Like Me on TV.” I also had some input on the title for my essay in the Washington Post: “My Daughter and I Are Autistic. Here’s How We’ve Bonded Through Ballet.”  But I didn’t write the title for my essay in the New York Times, “What a Muppet With Autism Means to My Family,” where person-first language is used even for Julia, the Sesame Street Muppet.

When I chose my Twitter handle @momwithautism (simply because @autisticmom was already taken), some other autistic people publicly shamed me on Twitter for using this handle and even blocked me from following them. They felt that by using person-first language to describe my autism, I was being disrespectful to all autistic people.  Another autistic woman defended me on Twitter, saying that I had a right to choose the language I used to describe my own autism.  My response was simply not to respond, other than liking the post that came to my defense. I don’t engage with bullies.

I choose to call myself both an autistic mom and a mom with autism. When my kids are old enough to understand the language around autism, I will ask them what they prefer. For now, I refer to them as my autistic kids to acknowledge that autism is part of their identities.

Dear Autism Dads

This Father’s Day, Autism Moms Are Beautiful celebrates all of the dads, grandfathers, and other father figures in our Autism community. Thank you to all of the autism dads who work diligently and selflessly to make the world a more understanding and accepting place for children and adults with autism. We want you to know: We see you!

Every day, great fathers are working alongside their children’s teams, supporting their program, and celebrating their winning moments. We see you!

We see you move beyond your grief of what you thought your relationship with your child would be and into joy and pride for the privilege of loving your unique child.

We see you gain insight into your child’s needs, gain knowledge about therapies, and contributing daily to the goals for your child.

We see you make your other children a priority.  Giving attention and play time to them, so they know they are valued and special too.

We see you in the vulnerable moments when you are not sure you can do it all.

And, we see you get up the next day, renewed in your commitment to give your all to your family.

For all you do, we celebrate and appreciate the way you take on the role of “Dad”. We honor all that you do to make the world a better place for our Ausome kids.

On behalf of all of us at Autism Moms Are Beautiful magazine:

Happy Father’s Day!

Summer Safety

School will soon be out for summer, which means your child’s daily routine will likely change. School days replaced by days filled with activities. New smells and sounds from the beach and boardwalk treats to fireworks and festive parades. Quality time with friends and relatives living outside the area. These may not seem like red flags to most people, but for children with autism the hallmarks of summer often invite unpredictability and stress. This impacts not only them, but also their parents and siblings. However, with some simple planning, you can ensure that your child will not only be safe, but will also feel comfortable during the summer months. Autism Moms Are Beautiful magazine hopes that every person with autism is able to enjoy the fun and adventures that summer brings–with a little extra planning and preparation to keep everyone safe!

Summer Safety Plan

Summer often introduces new day providers, family members, or summer camp staff to help care a person with autism, and those caregivers may not be very familiar with autism and how autism impacts the care that a child with autism needs. In addition, during family vacations, travel, and visits to attractions, there will be many people who do not have a high level of autism awareness.

Before the summer begins, develop a Safety Plan for your child. Prepare emergency information cards for home, camp, and any vehicles in which your child may travel. Make sure each emergency contact information card is current and includes a current photo of your child.

Consider this great tip from a fellow Autism mom: She takes a full body picture of her child each day with her cell phone. That way, if her child ever wanders away, she always has a current photo readily available, including the clothes her child is wearing that day.
Summer is a great time to introduce your child to your neighbors, since so many are outdoors. Talk to them about your child, and the tendency of people with autism to wander, and ask them to notify you immediately if they see your child wander away from your yard.

Summer School, Day Care, or Camps

All caregivers must understand that a person with autism has a higher likelihood of wandering or unknowingly putting themselves in danger. Care providers will have to have their eyes on your child at all times. Look for a summer program that can assign a staff member to your child, or to a very small group of children. Prepare the staff for your child’s unique meltdown triggers, and the calming strategies that work best for your child. All babysitters should also understand why extra door locks and noise-alerting alarms are installed and are necessary in your home. Prepare to lock away all household toxins and hazards to prevent life-threatening situations.

Beaches, Water Parks and Amusement Parks

Never allow your child alone or away from a trusted adult when going to the beach or water park. Don’t hesitate to have your child wear a life preserver. Take the time to introduce your child to any staff and lifeguards at the local pool, tell them that your child has autism, explain how to communicate with your child, and discuss any behaviors the staff and lifeguards should anticipate. Make sure your child knows and understands the rules to the best of his or her abilities. Pictures or social stories can help with those rules.

Travel Logistics

Many families travel to a summer destination. Before your trip, review the destination website of any attraction or park you plan to go to. Some destinations will make special accommodations for your child with autism. They may also offer a social story to help prepare your child for a new adventure. If not, you can always make your own social story with pictures of your destination. A social story refers to stories drafted for individuals with autism to familiarize them with what to expect and social behaviors relevant to a particular environment.

Plan Ahead
Create a packing list, taking your child’s sensory needs into consideration. Where will your child be staying at? Should you bring along a sound machine to facilitate sleep? Involve your child by watching a movie or reading a story about your destination. You can also create a social story that includes pictures of the different things you’ll encounter at your destination.

Avoid Surprises
Create a schedule and review it daily with your child. Forecast any issues your child may have and plan ahead, so you can hopefully bypass them. For example, if you are going to have an unavoidably long day, pack something to entertain your child. Also consider allowing your child to choose between two activities to make them feel more in control of the situation. Use a cell phone alarm clock to alert you about potty breaks and check-ins with your child.

To Grandmother’s House We Go
Create a social story or picture book for your child about their relatives you’ll be visiting. This will help your child learn who the relative is and be more comfortable around other family members, making the visit more enjoyable for both parties.

On this type of summer trip, you may be able to exert more control. Contact the relative your family is visiting in advance of your arrival and share any specific needs or environment-related requests, such as sleeping and play spaces, as well as sensitivities to smell, sound, touch, etc. Use this conversation to familiarize your relative with your child if the two have not interacted recently. This will make for a much smoother trip for everyone involved.

Navigating Airports

An airport can be a particularly difficult situation for a person with autism. With all of the sounds, lights, people, and hustle and bustle, there may be too much surrounding stimulation. If you anticipate that your family member may have a hard time in an airport, contact the Airport Authority before your scheduled flight. Find out if they offer an Autism Program to walk them through the airport, sit on a plane, or review a social story that will help prepare them for the flight. Contact TSA Cares at 1(855)787-2227 at least 72 hours in advance if you and your child will need help navigating the security lines and search areas. TSA can also assign you a Passenger Support Specialist to assist you at the airport. Remember to carry your child’s Emergency Information cards with you and a copy for any rental vehicles as well.

We at Autism Moms Are Beautiful magazine encourage you to develop your safety plan before summer begins. Having a Safety Plan in place helps prevent issues BEFORE they happen. Enjoy your summer with your family and friends, Autism Moms!