To build a future for their son, A couple plan $12 million community for young adults with autism

A Dallas couple is planning to construct a $12 million community for people with autism on nearly 29 acres of land that was formerly a polo ranch in the Denton County town of Cross Roads.

It will include 15 homes, a community center and access to a ‘transitional academy’ that is designed to help young adults with autism develop the skills needed to live and work independently.

Clay Heighten, a retired emergency doctor and founder of a real estate management company, and his wife Debra Caudy, a retired medical oncologist, are leading the project.

he inspiration is their 19-year old son, Jon, who is on the severe end of the autism spectrum and requires a high level of supportive care.

Both worry that people like Jon have little options as adults.  “It’s about offering a choice,” explained Heighten.

“We’re trying to create something that would provide an enriched quality of life, so that people like Jon eventually require less supervision,” he said.

In October 2015, the couple invested $745,000 to purchase the land, and last year created a non-profit called 29 Acres to raise money for the project.

Dallas couple to build housing community for people on the autism spectrum
Retired doctors Clay Heighten and Debra Caudy have invested $700,000 to purchase nearly 29 acres of land in Cross R…


They have had $1 million committed, predominantly from a handful of other North Texas families who also have children with autism. The hope is to break ground on construction by the fall.

Aging with autism

Though early in its development, the project is already catching the attention of  local and national autism experts, who say there is demand for innovative models to help transition children with autism into adulthood.

Autism is a group of developmental disorders which can fall on a wide-ranging spectrum; some people with autism have only mild symptoms while others are severely disabled. Often individuals have difficulty communicating and some exhibit repetitive behaviors.

The condition is typically diagnosed in children before age two. One in 68 youths has autism, according to 2014 estimates from the Centers for Disease Control and Prevention. Other recent studies put the number closer to 1 in 45.

The steadily increasing rates of autism in the U.S. have led to greater public consciousness and could trigger a reevaluation of who gets diagnosed.

“We may need to be a little more strict,” said Dr. Patricia Evans, a pediatric neurologist and neurodevelopment specialist at the Children’s Health Center for Autism and Developmental Disabilities in Dallas. “Careful diagnosis is key to identifying autism as early as possible.”

In the meantime, she and others say that as research and supportive services have proliferated for children, not enough emphasis has been put on the “oncoming onslaught of adults” especially  those on the severe end of the spectrum, who are going to need help.

About 50,000 students with autism exit high school each year in the U.S. and an estimated half million will enter adulthood over the next decade, according to a 2015 report from the A.J. Drexel Autism Institute  in Philadelphia.

The lifetime cost of supporting an individual with autism is $2.4 million if the person has an intellectual disability, and at least 40 percent do, according to a 2014 study in JAMA Pediatrics. Health care economists estimate the yearly cost of autism in the United States is $236 billion.

The CADD center at Children’s Health  recently formed a multi-disciplinary clinic to transition young adults from pediatric clinicians to adult-based primary, mental health and other specialists. The growing demographics has led to focus on needs beyond medical expenditures.

Residential care, supportive living accommodations and productivity loss  account for some of the highest costs. “The employment and housing situation for people with autism lags way behind,” said Michael Bernick, a fellow with The Milken Institute, an economic think tank.

About 87 percent of young adults with autism lived with a parent at some point after high school, compared to about 21 percent of all young adults. Compared to young adults with other types of disabilities, fewer on the autism spectrum had a paying job between high school and their early 20s.

Bernick anticipates more attention in coming years as people with autism seek to integrate into mainstream life. “Separate communities can play a role, especially for the more severely impacted,” he said. “There is no dearth of adults on the spectrum who would be interested.”

A passion project

The founders of 29 Acres hope the community, situated on a plot of land just south of U.S. Highway 380 in Cross Roads, will fill in some of the gaps.


The initial design includes space for a 7,100-square-foot community center, and 15 homes of around 3,000 square feet that can be divided into duplexes or quads and house 56 people.

Four homes will be built during phase one,  and the first set of residents could move in by 2018.

When complete, the complex will employ about 200 full- and part-time staff, including security guards, administration and one-on-one specialists who are experienced in living with and caring for people with developmental challenges.

The town of Cross Roads is on the cusp of a suburban transformation and that was part of the appeal for Heighten and Caudy.

They wanted a location where the autism community could feel safe but also have access to the surrounding community and not feel isolated.

There are plans to build a bus stop near the property and make ride-sharing services like Uber and Lyft available so that residents can get to work, grocery shop and feel a part of the community.

A key feature of 29 Acres will be a transition program that could cost upwards of $50,000 per student. The hope is that scholarships will offset much of the cost. The academy is designed with the support of Jeff Ross, founder and director of a similar transition to independent living institutes in Arizona and California. This will be the third project he’s assisted in building.

“To me, that’s the way you advance best practices— by collaborating with people who are already  using a curriculum with a proven track record,” Caudy said. “That way we can pool our resources and increase the cohort to make better determinations on outcomes.”

In fact, identifying best practices was a key priority of the Autism Cares Act, signed into law in 2014. It called for proposals on programs that would help transition young adults with autism from existing school-based services to adult services.

The local academy aims to work with nearby academic institutions to employ graduate students and fellows to participate in research that improves outcomes for young adults with autism.

Finally, the property may bring on businesses like Smile Biscotti, a bakery founded in Arizona in 2013 by a young adult with autism.

Jon Heighten has been baking, packaging and selling it from home after his parents launched Smile Bisscotti DFW in November.

Need for options

While promising, experts note that when it comes to autism there is no one-size-fits-all approach.

The range of what is considered success for someone with autism is just as diverse as the condition’s wide-ranging spectrum. Trying to live alone or hold down a job may not be the best option for everyone.

“Just because they can live alone, doesn’t mean it’s a good thing,” Evans said.

Depression and isolation are common issues for people with autism.  Over one-quarter of adolescents on the spectrum also tend to wander, or impulsively leave a supervised situation, increasing the risk of getting lost.

Residents at 29 Acres will be screened to evaluate their level of need. They will be involved in the design of their own  program and be able to make determinations about where they see themselves down the road.

Not everyone will be a good candidate for an independent-living program, but they will still be able to live on the property, with professional support for their unique needs.

Jon Heighten, for example, will never be able to live completely on his own, his mom explained. One can get a sense of the challenge some families face when they have children with autism while watching Jon go about his day.

He doesn’t speak much, but sometimes repeats back what is said to him. “Happy birthday!” he excitedly responded to those wishing him well during his party in December.

He’s thrilled about tackling projects and smiles brightly when someone praises his good work.  It’s not uncommon for him to stand and suddenly leave a room, wandering off with no clear destination.

Not surprisingly, parents are often the first to come up with creative solutions to manage. Evans is aware of other families who have children with autism in North Texas who have collectively purchased homes together. They share the space, like a co-op, working together to support one another.

There are many recent efforts to assist people with autism in finding work, according to Bernick, who has written about trends in autism employment likely to continue in 2017. They include targeted hiring by large employers, the launch of autism-focused small businesses and internet-based creative programs.

“But we need a wider range of options,” he said, noting that he too became involved in the autism community when his son was diagnosed in 1991. “All of us parents of have the concern, ” he said.

Jon Heighten turned 19 last month, but his parents got the idea to start 29 Acres when he was in his early teens. That’s when they began to look for housing and employment options diverse enough to meet his needs if they were no longer alive to take care of him.

“We couldn’t find anything. So we just decided to do it ourselves,” said Caudy, who is 59. “We want to do it not just for him,  but for many of the others out there like him. The need is enormous.”



Autism gene may double as pain processor

The gene SHANK3, a leading candidate for autism risk, helps sensory neurons respond to pain, according to a study in mice. The findings may provide a genetic explanation for the high pain threshold seen in some people with autism.

SHANK3 is mutated in about 2 percent of people with autism. It is missing in people with Phelan-McDermid syndrome, a condition marked by autism, severe intellectual disability and a blunted sensitivity to pain. Individuals with either condition often show a muted response to extreme temperatures or pressure.

Most studies of SHANK3 have focused on the gene’s role in the central nervous system, where it supports communication between neurons. The new study, published 1 December in Neuron, reveals a role for SHANK3 in sensory neurons just outside the spinal cord. This makes SHANK3 necessary for the proper perception of pain.

“We made a surprise finding that SHANK3 is expressed in the peripheral nervous system,” says lead investigator Ru-Rong Ji, professor of anesthesiology at Duke University in Durham, North Carolina.

Ji and his colleagues studied mice missing one or both copies of SHANK3. These mice have features reminiscent of autism, such as impaired neuron signaling, social problems and repetitive behaviors.

The mice respond normally to certain painful stimuli, such as hot and cold temperatures and puncture wounds, the new study found. But mice with a foot that is already inflamed from bacterial infection do not perceive as much pain from heat as controls do.

Peripheral issue:

The neurons that sense inflammatory pain reside in the dorsal root ganglion, a bundle of nerves that nestles against the spinal cord and relays sensory information from the rest of the body. Ji and his team examined cells from the dorsal root ganglion of SHANK3 mice.

In control mice, SHANK3 tethers a protein called TRPV1 to the surface of sensory neurons, where it detects heat and chemical signals. Those signals activate TRPV1, causing calcium ions to flood into the cell, leading to a painful sensation.

Neurons from control mice show a robust influx of calcium ions in response to capsaicin, the chemical that gives chili peppers their heat. But the chemical triggers significantly less calcium flow into neurons from SHANK3 mice.

Ji and his team engineered a third strain of mice, lacking SHANK3 only in the sensory neurons of the dorsal root ganglia. These mice show a decrease in sensitivity to inflammatory pain similar to that seen in mice missing SHANK3 everywhere. The finding also suggests that the insensitivity to pain seen in SHANK3 mice stems from sensory neurons and not from the brain’s inability to process pain signals.

The study stokes curiosity about the connection between autism and TRPV1. This protein aids heart and lung function, and has been linked to addiction, anxiety and depression, says Camilla Bellone, assistant professor of neuroscience at the University of Geneva in Switzerland, who was not involved in the study. “It would be really interesting to see if TRPV1 dysfunction could explain other [features] associated with autism,” she says.




The Truth About Autism And Sleep

I am tired. Tired in a way that is different than any tired I have known before. A deep tired. A tired that feels defeating sometimes. A tired that is beginning to feel permanent.

Six months ago, my 4-year-old son slept through the night. And then one night he just stopped.

He stopped sleeping because of his Autism Spectrum Disorder. A symptom that I did not even know was a symptom of autism until it happened to us. One of the many things along this journey that I did not see coming.

But, that is what this journey along the spectrum is all about. Time and time again, we are caught off guard. Left with no other choice than to fight through the obstacles.

The autism in my life looks very different than the autism I learned about in textbooks. I had a pretty clear vision of autism in my head. It was filled with all of the buzz words: fidgeting, non-verbal, rigidity, aggression, savant intelligence. In my mind, autism looked one specific way. I thought that I would see autism and recognize it instantly.

I never imagined I would live with my son for two years without recognizing his autism. But, I did. Because autism is anything but textbook.

Autism is ever-changing. It looks different from one moment to the next. It is so complex. Too complex. It is intricate. It is so many things entwined together inside of my beautiful little boy. It is a puzzle, and I am forever working to solve it. And, just when I think I have it figured out, it becomes something different.

That is what happened with sleep. Our son began sleeping through night consistently at eight weeks old. And then all of the sudden six months ago, he just stopped.

As a parent there are times when you expect not to sleep. After bringing home a newborn baby, you know that there will be sleepless nights. When our children are sick, we anticipate that there may be some spotty sleeping going on. When we stay out WAY later than 30somethings with two young kids should stay out. Because the later the parents go to bed, the earlier the children wake up.

All of these sleepless moments are an inevitable part of the parenting journey. You expect them. You are prepared for them. When our 4-year-old son stopped sleeping because of his Autism Spectrum Diagnosis, we did not see it coming. We were not prepared.

So for the past 6 months we have been fighting through the sleepless nights and the exhausted days. We exist in a tired haze.

Our son sleeps through the night about once every three to four days. That night of sleep is bliss. He sleeps a full 10 or 12 hours. We wake up in the morning ready to take on whatever the world throws our way. The nights in between are not so victorious.

We typically spend three to four hours awake coaxing our son back to sleep. And, by the time finally help him back to sleep, it is time for the parents to wake up and start the day.

Being tired has become a lifestyle.

We have tried so many things to help counteract our son’s sleep challenges. Some remedies work right away and then taper off. Some remedies never work. Sometimes we are not sure if a particular thing is working or not.

We have tried essential oils (in any and every combination possible), melatonin, reduced screen time, removing sugar, aromatherapy, calming music, white noise, blackout curtains, weighted blankets, compression clothing, etc. You name it, we have tried it.

The best stretch of sleep over the past six months came just after we introduced essential oils in a diffuser. We slept through the night for 10 NIGHTS IN A ROW! We were convinced that we found the remedy. We were ready to happy dance the sleep deposit all the way to the bank. It was awesome. Until it stopped.

The only thing worse than not sleeping through the night, is not sleeping through the night after 10 nights in a row of sleeping through the night. It was just long enough to forget about the sleepless life style.

Some days I am so tired that I could just cry. Actually, some days I am so tired that I do cry. I ask myself how I can keep going without sleep. I put all of my faith in the belief that this is a phase that will end. Because it will end. It has to end.

But our own exhaustion is not even the worst part. The hardest part is watching our little man struggle through his tired haze. It is seeing his behaviors at home and at school increase as a result of his limited sleep. It is watching the emotional roller coaster that follows his sleepless nights.

So we stock up extra on bold coffee and patience. Coffee for us and patience for each other. Because we are all tired. And nobody is the best version of themself when they are tired.

We take our sleep when we can get it. We keep trying new things. We keep fighting through the exhaustion.

We are tired. The tiredness makes everything feel heavier. Magnified. But we just keep pouring the coffee and fighting forward. One sleepless day at a time.



Comic Redesigns the Autism Spectrum to Crush Stereotypes

Rebecca Burgess sees a problem with the way many people perceive the autism spectrum. Her resolution? The comic below. The Tumblr user debuted “Understanding the Spectrum” (below), which gets rid of the linear autism spectrum image (i.e. you’re either “not autistic, “very autistic” or somewhere in between) and replaces it with a round spectrum full of several traits or ways the brain processes information.

“I want people to understand that autistic people don’t all fit a stereotype, and show people the consequences of stereotyping,” Burgess, from the U.K., told The Mighty in an email. “[Stereotyping leads to] underestimating the skills of autistic people or not believing someone [who is on the spectrum].”

The comic, which she released in April for Autism Acceptance Week, has earned her messages from autistic people, parents and teachers, thanking Burgess for helping them explain the spectrum in a more accurate way.

Take a look at “Understanding the Spectrum” below, and let us know how you would describe the spectrum to someone unfamiliar with autism in the comments at the bottom.

explanation of how it's confusing to explain autism


graph of how autism used to be described as a linear spectrum


linear spectrum for autism doesn't work

phrases being yelled at a person with autism


introduction to colorwheel autism spectrum

further explanation of how to think of the autism spectrum

this spectrum explanation would lead to more acceptance

autism spectrum explained as a color wheel


The Autistic Brain : ASD People’s Brains Are More Symmetrical, Changing How Information Flows

Brains with autism are more symmetrical than others, but in this case, symmetry means something a little different from what you might expect.

A study published in the Journal of the American Academy of Child & Adolescent Psychiatry says imaging revealed that children and adolescents with autism spectrum disorder have fewer asymmetries in their brains compared to non-autistic peers, suggesting that the two sides of their brains are not divvying up tasks in the same way. The study, from San Diego State University neuropsychologists, called what the two halves of the brain are supposed to be doing “different processing modes” — the left is more specialized while the right is more integrative. That division of labor creates asymmetry in the brain, but that effect was “diminished” in the youths with autism.


Autism spectrum disorder is a group of developmental disorders that are most well-known for causing difficulty communicating or interacting with other people. According to the National Institutes of Health, signs of the disorder could include: being upset by a change in routine; a lack of eye contact; difficulty holding a conversation; being unable to understand other people’s perspectives or actions; and responding to others’ emotions or words in an unusual or incongruous way. People with autism may also have limited interests and repetitive behaviors. The symptoms vary, with some experiencing only mild impairment while in others the effect is severe.

Brains of people with autism look different from typical brains.Image courtesy of Pixabay, public domain

The university explained in a statement that typical brain development includes separating tasks between the left and right hemispheres: “The left hemisphere, for instance, is involved in analyzing specific details of a situation, while the right hemisphere is involved in integrating all the various streams of information coming into the brain.” That right hemisphere has more densely packed connections in a typical brain, according to the imaging study, whereas autistic brains have more evenly distributed connections across the hemispheres.

The difference between that typical development and the development of a brain with autism could explain how the disorder is linked to the cognitive difficulties those people experience. “Many people with ASD are very good at seeing details but have difficulty putting it all together into a cohesive narrative,” the university said, referencing the idiom that they are “not seeing the forest for the trees.”

However, the statement noted, researchers must still determine whether the more even distribution of connections between the brain’s left and right hemispheres are causing the cognitive impairments, or vice versa.




Autism And Anxiety Symptoms : How They Differ; New Test Helps Identify Symptoms In Children

Researchers are trying to identify and treat anxiety in children with autism, fighting against a developmental disorder that often masks the symptoms of mental illness.

According to a study in the Journal of Clinical Child and Adolescent Psychology, autism spectrum disorder and anxiety often show themselves in similar ways, causing social avoidance or fear of change, so diagnosing anxiety is “inherently challenging.” But Drexel University researchers developed a method to properly identify anxiety disorders that the study says has proven effective after being tested in several dozen autistic kids between ages 8 and 13 who had not previously been diagnosed with anxiety. The new method differentiates between coexisting anxiety disorders and “overlapping and ambiguous anxiety-like symptoms” in autism, offering a more precise way to identify the mental illness.


One thing that makes the process so complicated is the internal nature of anxiety. “Anxiety is considered an internalizing symptom, in that it is mostly felt by the person inside their bodies and minds and is not always obvious to others,” Drexel assistant research professor Connor Kerns said in a statement from the university. “For example, a child may avoid a social situation because they are not socially motivated — a symptom of autism spectrum disorder — or because they are afraid of being socially rejected — a symptom of anxiety.” Communication is another problem: People with autism often have difficulty expressing themselves, but caretakers like parents may not be able to distinguish between anxiety and autism symptoms.

child-1592472_1920A new tool may help identify anxiety disorders in children with autism, which could help their development.Image courtesy of Pixabay, public domain

But the assessment tool Kerns and her team created, the Autism Spectrum Addendum, to add to the current anxiety diagnostic system, asks questions specifically geared toward discerning between the two. As the results of the patients’ diagnoses held up after they were analyzed with other existing assessment tools, the university said the new method will be a crucial tool in relieving anxiety in these patients.

“Treating anxiety is important in autism spectrum disorder because anxiety is associated with significantly more impairment for the child and their family,” Kerns said. “That can include more stress, more self-injurious behavior and depression, and more social difficulties and physical ailments.” When children with autism experience anxiety, she said, it could make it harder for them to cope with or overcome life’s challenges or pursue activities that are crucial to development. “Put another way, when your anxiety is high, you are focusing on surviving rather than living, and this has real consequences on your mental, emotional and physical health.”



aggression in child with high functioning autism

Understanding The Battle Of An Aggressive Autistic Child

In the US, 1 out of 68 children breathes with autism spectrum disorder (ASD), reports the Centers for Disease Control and Prevention (CDC), and the frequency of ASD appears to have vividly increased since 2000, when 1 out of 150 children have their diagnosis. As a developmental disability, ASD causes “significant social, communication, and behavioral trials.” While researchers continue to unlock the secrets of ASD, behavioral health methods must work to help parents and caregivers of children understand this disorder’s insinuations for daily activities and behaviors basis, including impact on the circadian rhythm, cognitive abilities, and treatment styles.

Behavioral Impact of Autism

Children and teens with ASD may refrain from exhibiting the typical behaviors of children. Per the CDC, children with ASD may show the following signs and symptoms:

  •  Avoiding eye contact.
  •  Not appearing engaged when interacting with others.
  •  Having trouble in understanding the feelings of others.
  •  Preference to avoid contact, such as being held or cuddled.
  •  Repeating phrases or words in place of typical language.
  •  Havingtrouble speaking.
  •  Repeating actions multiple times.
  •  Having unusual responses to sensory perception of things.
  •  Exhibitingaggression, irritability, or inattention.
  •  Having trouble in adjusting to changes in routine, such as a change in sleeping habits may cause behavioral impact.

Adults are not outsiders to how changes in environment can damagingly impact sleeping patterns, the circadian rhythm. Sleep deprivation has been shown to decrease cognitive responsiveness and functioning, explains Len Kravitz, Ph.D. of the University of New Mexico. Yet, new research advises the link between quality of sleep in children with autism may be more essentially linked to behavioral problems during the day.

Autism and Sleep

Children and teens with autism may be more likely to knowledge trouble falling asleep, staying asleep, or waking early. Psychologist Micah Mazurek and Dr. Kristin Sohl, pediatrician, found increased sleep problems in children with autism often coincided with increased interactive problems during the day. For children and teens who experienced high levels of sleeplessness or difficulty when sleeping, the incidence of behavioral problems, especially violence and hyperactivity, grew the most.

“It’s important that individuals with ASD are routinely screened for underlying medical conditions, including sleep disturbances.”

Autism Treatment

Autism is incurable, and researchers have yet to find a conclusive, biological test to analysis cases of ASD. The diagnosis is now reached by studying a child’s behaviors and health progress. Although a diagnosis may be made early at age 2, many kids are not diagnosed until later during childhood, such as when reaching school-going age. A sooner diagnosis equates to the earlier use of treatment methods to lessen the disorder’s evolving impact.

Autism and Applied Behavior Analysis

Treatment of autism may include actions and communication therapies, dietary specialist care and regulation, medication cure, and the use of corresponding and alternative medicine.

The link between autism and applied behavior analysis (ABA) seems to hold the most promise. ABA teaches positive behaviors and dampens negative actions in a healthy environment. This is skillful using values and support.

ABA may also be broken down into four categories, per the CDC, which contain the following below:

  •  Discrete trial training (DTT)breaks down complex behaviors into their simplest steps, and positive reinforcement is used to reward truthful behaviors and answers. Negative support of ignoring behavior is used when the incorrect behaviors or answers are exhibited or given.
  •  Early intensive behavioral intervention (EIBI)refers to the use of ABA for children younger than 5-years-old.
  •  Pivotal response training (PRT)educates children with ASD to monitor their own behaviors and starts to dialogs with others. Thus, the impact of this type of ABA should extend to other behaviors. For instance, a child in PRT may attempt to “go back to sleep” when waking up early without meddling from parents or caregivers.
  •  Verbal behavior intervention (VBI)imparts children with ASD verbal skills and for further encouragement to focuses of PRT and DTT.

Each state has a technique in place to help the parents of children under age 3 attain early handling services, including the therapies, via the US Department of Education.


Certain medications may help manage hyperactivity or sadness in children and teens with ASD; however, these medications are incapable to treat the primary indications of the disorder.


Some health experts may advocate for dietary variations in children and teens with ASD. For example, a diet with a lessen water or any liquid intake after 6:00 p.m. may help to reduce waking while sleeping. Most dietary changes focus on refining overall health, which may help reduce any rate of ASD symptoms and behaviors.

Complementary and Alternative Medicine

Complementary and alternative medicine, otherwise known as CAM therapy, explains the National Center for Complementary and Integrative Health, states to the use of non-traditional approaches of treating a given disease. These means may include the use of herbal supplements, acupuncture, yoga, breathing exercises, and deerlike therapy. Up to 33 percent of parents and caregivers use CAM therapy to help with ASD. However, some of these remedies can be dangerous, such as a toxicity due to herbal supplementation of the diet and adverse relations between supplements and medications. Behavioral health training should include a focus on the standing of discussing CAM therapies with a child’s pediatrician and psychologist prior to starting any therapy.



Autism Is Big. But, I Am Bigger .

Processing an autism diagnosis is not easy. When my 2-year-old son was diagnosed with autism spectrum disorder, I had no idea how to keep moving forward. I had no idea how to be the mom that he needed me to be. I had no idea what to think and feel. And, I had absolutely no idea what to do next.

In many ways I am still going through the motions and the emotions of the diagnosis. My son’s autism does not exist in a bubble. It is exists in our life. Our crazy, amazing, chaotic, sometimes-messy life.

And, there are times when it feels like the biggest part of our life. It is around us everywhere we go. We cannot out run it. We cannot outsmart it. All we can do is work  each and every day to be strong enough to survive it.

Believe me, I do not use those words lightly. I get that you may not understand why I would talk about my life in terms of survival. I get it, because I did not understand it at the beginning either.

At the start of this journey I did not understand the depth of pain. The emotional pain of watching our son struggle. The physical pain we experience trying to keep him safe from himself. The financial pain. The growing pain.

Autism is big. It should come as no surprise that the pain autism leaves in the wake is big too. So, we process our pain. We process our pain over and over again. Sometimes we get done processing our pain, and then we start all over again. And then again.

We will do this until is stops hurting. Because in my heart I need to believe that it will stop hurting one day.

After diagnosis, I was different. I felt everything differently. I started to feel myself change. I was a passenger on a journey that I was not prepared for. A guest as a party that I did not RSVP for. A parent chosen for a life that I was not certain I was capable of. And yet, there I was.

In order to move past the diagnosis, I gave into the emotions inside of me. I let myself feel what I needed to feel. I hoped that if I felt what I needed to feel, then one day I might be who I needed to be.

First I felt fear. I felt confused and bewildered by so many things that I did not know. I devoured every piece of information. I think this phase of my journey is best labeled “the Google phase.” I went in search of answers to my questions and I returned with even more questions.

Armed with too little information and too many questions I began to feel defensive. I looked for ways to disprove the diagnosis. I tried to poke holes in something that I did not even understand.

Not because I needed my son to be anything different then he was. That was not it. I needed to be the kind of mom who could fix things for my son. And this was the first time I could not do that. I could not fix the autism away.

As the defeat set in the defensiveness became anger. This specific kind of anger is hard to describe. It is the anger of a parent; helpless and powerless to protect their child from something that feels very big. Something very real. Something very permanent. It is a crazy kind of anger. It is an anger that makes you kick and scream and demand to know “why?” It is an anger that slowly creates emptiness.

And when the emptiness sets in, when there is no more anger inside of you, the sadness enters. The feeling of loss. The mourning. And all at once the sadness washes over you in a way that is both a relief and a burden. Relieved to be free of the anger. Burdened by the magnitude of the sadness. And then time passes and the sadness starts to feel normal, comfortable even. After a while you begin to accept that the sadness may never end.

But it does.

I learned that I had to feel the fear and the defensiveness, and the anger, and the sadness, and the loss. Each of those feelings is a part of a much longer journey. The inevitable journey towards acceptance. So I felt the things I needed to feel in order to be who I need to be.

This process is not linear. In many ways, yes, it is a progression. But the movement is not always forward. Sometimes I go around and around in circles. I spend a lot of time in acceptance. But, I am often drawn back to anger and sadness and fear. They are a part of this never-ending journey.

So I go back to those darker places from time to time. I stay there as long as I need to. And when I am done feeling what I need to feel, I fight my way back to acceptance. So that I can be who I need to be.

Autism is big. The pain is big. The sacrifices are big. But the love is big too. The pride of watching our son progress is big. The feeling of accomplishment is big. The commitment is big. The future is big.

Autism is big. But, I am bigger.



These 8 Inspiring People Will Change The Way You Think About Autism And Asperger’s

In 2009, a shy, 47-year-old Scottish woman touched the world with her breathtaking rendition of Les Misérables’ “I Dreamed A Dream” on Britain’s Got Talent. After the performance, Susan Boyle catapulted into a singing sensation, selling more than 14 million records worldwide.

But despite her meteoric rise over the past few years, Boyle has, more recently, been coming to terms with a more private matter. Last week, she revealed to The Observer that she was diagnosed with Asperger syndrome by a Scottish specialist about a year ago — a revelation that she calls “a relief.”

“Asperger’s doesn’t define me. It’s a condition that I have to live with and work through, but I feel more relaxed about myself,” she said in the interview. “People will have a greater understanding of who I am and why I do the things I do.”

Asperger syndrome is one of a group of developmental brain disorders, which are collectively called autism spectrum disorder or ASD, according to the National Institutes of Health. Asperger’s affects the ability to socialize and communicate with others, the Mayo Clinic reports, and is characterized by symptoms that may include one-sided conversations, unusual nonverbal communication, obsession with one or two specific subjects and difficulty “reading” others. Other ASDs include autistic disorder (or classic autism), pervasive developmental disorder not otherwise specified, Rett syndrome and childhood disintegrative disorder.

While many people in the public eye are speculated to have an autism spectrum disorder (among them, Courtney Love, Mozart and Tim Burton), Boyle joins a group of famous faces who have spoken out publicly about their diagnoses. Read on for seven more inspiring people with an autism spectrum disorder.

James Durbin
james durbin
The American Idol alum (from season 10), who recently released his new single, “Parachute,” was first diagnosed with Asperger syndrome and Tourette syndrome at age 10. “Right around the time when I was diagnosed, I got a hand-me-down guitar with a chord book and a cheap busted tuner,” Durbin told Autism Speaks last month. “I think music is like medicine and can be a benefit for anyone no matter what genre. There’s just so much you can learn. It’s all about focus and for me, not only on the Autism spectrum but also the Tourette’s spectrum, focus was something I needed help with. Music is my focus.”

Music also became a way for Durbin to cope with bullying growing up. “Throughout this process, I figured out that no matter how bad of a day I had at school, I could come home and create my own world within the music,” he wrote on CNN. “I could make the music as happy or as sad as I wanted it to be. I used the pain from being bullied to transform me into who I was meant to be.”

Daryl Hannah
daryl hannah
Earlier this year, the actress opened up to People magazine about being diagnosed with autism as a child, and how it contributed to a fear of fame as an adult, HuffPost previously reported. That fear caused Hannah to retreat from life in the spotlight. “I’ve never been comfortable being the center of attention,” she told People. “It’s always freaked me out.”

Dan Aykroyd
dan aykroyd
The actor and writer told the Daily Mail earlier this week that, like Durbin, he has been diagnosed with both Tourette syndrome and Asperger syndrome. And he says the latter actually helped to inspire the movie Ghostbusters. “I also have Asperger’s but I can manage it. It wasn’t diagnosed until the early 80s when my wife persuaded me to see a doctor,” he told the Daily Mail. “One of my symptoms included my obsession with ghosts and law enforcement — I carry around a police badge with me, for example. I became obsessed by Hans Holzer, the greatest ghost hunter ever. That’s when the idea of my film Ghostbusters was born.”

Heather Kuzmich
heather kuzmuch
When America’s Next Top Model cycle nine began in 2007, the audience met 21-year-old Heather Kuzmich, who was diagnosed with Asperger syndrome. “It was a point in my life where I was thinking either Asperger’s was going to define me or I was going to be able to work around it,” Kuzmich told The New York Times of her decision to join the competition show. “At first I was really worried people would laugh at me because I was so very awkward. I got the exact opposite.”

The contestant finished in fifth place, and was voted as the viewer favorite eight weeks in a row. “I was at the bottom of the totem pole,” she told People about her time growing up. “I wanted to be a role model for girls who aren’t the most popular and are picked on.”

Dan Harmon
dan harmon
The Community creator started learning more about Asperger syndrome while developing the character of Abed for the NBC show. “So, in a very naive way — and I’ve never told anybody this before — I started researching the disorder,” Harmon told Wired in 2011. “I started looking up these symptoms, just to know what they are. And the more I looked them up, the more familiar they started to seem. Then I started taking these Internet tests.”

Wired reports:

Eventually, Harmon met with a doctor and came to understand that symptoms of the disorder lie on a spectrum, and that in fact there is a place on it for people with inappropriate emotional reactions and deep empathy. Harmon now sees that he may fit somewhere on that spectrum, though figuring out exactly where could take years.

Alexis Wineman
alexis wineman
Earlier this year, Miss Montana became the first Miss America contestant with autism to compete in the pageant. At age 11, Wineman was diagnosed with pervasive development disorder, CNN reported.

“My path may not be one that another person would choose, but I challenged myself to enter the Miss America competition because it seemed like the peak to my own personal Everest,” she wrote for CNN in January. “It also seemed kind of ironic: a girl who was told she was different and considered an outcast by many, in the nation’s biggest beauty pageant.”

She reached the top 15 in the competition, and won the America’s Choice Award, according to CNN, for garnering the most online viewer votes. “So many people expect autistic people to all be the same — that it’s a brain disorder so we can’t function in society,” she told Time. “I want people to realize there’s a whole spectrum of people who live with autism. There are high-functioning people and low-functioning people.”

Temple Grandin
temple grandin
A professor of animal sciences at Colorado State University, the university calls her “the most accomplished and well-known adult with autism in the world.” According to her website, Grandin didn’t speak until she was three and a half years old, “communicating her frustration instead by screaming, peeping and humming.” After receiving a diagnosis of autism, her parents were told she should be institutionalized. She wrote in her book, Emergence: Labeled Autistic:

I have read enough to know that there are still many parents, and yes, professionals too, who believe that ‘once autistic, always autistic.’ This dictum has meant sad and sorry lives for many children diagnosed, as I was in early life, as autistic. To these people, it is incomprehensible that the characteristics of autism can be modified and controlled. However, I feel strongly that I am living proof that they can.

In addition to her work in the animal sciences (among her other accomplishments, Grandin developed corrals to improve quality of life for cattle), she has become an outspoken advocate in the autism community. In 2010, TIME named her one of the 100 most influential people in the world, and HBO produced a biopic based on her life called Temple Grandin, starring Claire Danes as the title character.



Donald Trump Will Be A Disaster For Autistic People

Donald Trump has never been a fan of disabled people. He’s got an obsession with the appearance of being “weak” or “crazy,” was hyperfocused on the idea that Hillary Clinton had some kind of neurological disorder like epilepsy, which he clearly viewed as a sort of human failing, and infamously mocked reporter Serge Kovaleski. But of all of the groups out there whom Donald Trump disdains, whom his policies will endanger profoundly, autistic people stand to suffer the most.

Trump’s coming at them from all sides. First, there’s his coy dabbling with antivaccine generalissimos like Robert F. Kennedy, Jr., and theVaxxed crowd. Kennedy met with Trump and claimed that Trump had invited Junior to head up a “vaccine safety and scientific integrity” commission of some kind. It would certainly be richly ironic to have avowed antivaccine irrationalist Kennedy head up a commission on anything having to do with public health. The Trump team almost immediately equivocated about Kennedy’s statements, basically categorizing them as the equivalent of a nice chat. Currently, Kennedy is reported to be saying that he will be heading up such a commission while the Trump camp has no more comment.

But that chat, according to Trump’s team, was about autism, not vaccines, and about “forming a commission on Autism [sic].” Add that to Trump’s brash and reckless pre-election assertions about vaccines and autism, one of the few public health issues he attends to at all, and you’ve got the makings for an all-out destruction of the edifices that support the autistic population. Trump’s negative attention never bodes anything good and almost invariably means he intends to lay waste to the target.


Toying with Kennedy and bringing up autism yet again is just one way that Trump threatens this nation’s autistic population. And yes, it is a threat because every time someone raises autism as a specter and consequence to fear from vaccines, autism gets cast as the bogeyman. Trump’s own spouse seems to view a presumption of autism as an unforgivable insult. Vaccines aren’t the really scary thing in these narratives. Autism is. When you set up a neurobiological condition as something to fear, you set up the people who are that neurobiology as fearsome, too. And that has consequences ranging from social shunning and abuse to death and more death.

In addition to doing this nonfavor to autistic people by way of coying a relationship with RFK, Jr., Trump is coming at the autistic community on its flanks. His nominee for attorney general, Jeff Sessions, thinks that the Individuals with Disabilities Education Act “undermines the educational process,” and he shows a clear ignoranceof this and other federal protections for disabled children in the classroom. Based on Sessions’ own comments, if he had his way, these protections would be gutted or ignored, leaving autistic students and other disabled children warehoused and isolated, treated like second-class citizens or worse. Trump’s choice for education secretary, Betsy DeVos, is no fan of public schools, the only place where students with disabilities can receive their federally mandated educational rights.

With these attacks on the intrinsic humanity and education rights of autistic people, Trump also is coming at them on the health flank. With the collusion of most of the GOP in Congress, he plans to repeal the Affordable Care Act (ACA; a.k.a., “Obamacare”), a law that has been critical and lifesaving for the disability community as a whole and life-changing for autistic people. ACA allowed for early screening (and therefore early identification, awareness and, one hopes, understanding) without cost sharing. It removed lifetime caps and denial of coverage for pre-existing conditions. For the U.S., without ACA, 1% to 2% of the population would be considered to have a pre-existing condition called autism. Currently covered therapies for autistic people might no longer be covered. And then there are the co-existing conditions, like epilepsy, which about a third of autistic people have. And the coverage under ACA that extends to adult children up to age 26 years, critical coverage for young autistic adults whose access to jobs can be delayed or denied.

Then there are the threats to Medicaid. If Medicaid is gutted as threatened by being shifted to block grants, disabled and elderly people who received in-home care through its benefits will also be warehoused in institutions. Many of those affected will be adult autistic people. And lest you are not autistic and think that somehow will protect you, a reminder that in 2015, a total of 53 million adults in the United States had some kind of disability. That’s one in five adults, right now. How many adults do you have in your home? If you’re a family of five, odds are good that at least one of you will have a disability in adulthood. How would you like to be institutionalized and live with strangers to receive your care?