With great effort and dedication, this man with a severe form of autism learned how to be self-sufficient. He can now walk, eat and go to bathroom with no help. The autism spectrum refers to a broad range of conditions that affect individuals with greatly varying severity.

If you’ve seen one person with autism, you’ve seen one person with autism. It’s a common refrain among doctors who treat the neurodevelopmental disorder, which manifests differently in almost every case, even among the most closely related individuals.

People with autism engage in repetitive or obsessive actions and interests, struggle to communicate and have difficulty relating to others and to the world around them. But the exact features of the disorder, as well as its severity, can vary significantly. That’s why autism, now diagnosed in one in every 68 children in the United States, is no longer considered one condition but rather a spectrum of related but distinct disorders.

At one end of the autism spectrum is 26-year-old Taylor Newsum. He has difficulty picking up on certain social cues, but even so, each day he takes the train from his parents’ home in Brooklyn to midtown Manhattan, where he works as an administrative assistant in a psychologist’s office. He plans to become a social worker. At the other end of the spectrum is his sister, Savannah Newsum. Compared with Taylor, Savannah, 21, has much more limited verbal skills and social skills, and it is difficult for her to maneuver through the world without assistance.

“Taylor is very independent, highly functioning and will one day live on his own. Savannah will always require someone in her life to help her get through her day,” says their mother, Darnell Newsum.

That no single feature is present in all—or even a majority of—people with autism is a major roadblock not only in meeting the many different needs of those on the autism spectrum but also in understanding why the disorder develops in the first place. Now scientists are turning to families like the Newsums to search for clues where it begins: in our DNA.

A new study called SPARK—Simons Foundation Powering Autism Research for Knowledge—seeks to pinpoint genetics and other risk factors of autism by studying 50,000 individuals with autism and their family members. It’s the largest study of the disorder to date, built on an effort to sequence the exome—the sliver of the genome that accounts for almost 85 percent of the glitches known to cause human diseases—and dig through patient medical histories to identify certain genetic underpinnings of autism.

In the short term, this will allow researchers to begin to identify genetically defined subtypes of autism. Grouping and comparing individuals with similar genetic changes could yield clues about a person’s future prognosis and the health complications, such as seizures, gastrointestinal problems and schizophrenia, that are associated with certain subtypes. In the longer term, says the study’s leader, Wendy Chung, director of Columbia University’s clinical genetics program, SPARK’s findings could lead to individualized treatment options, from medicines to behavioral interventions, that take into account the disorder’s genetics.“Do I need to keep seizures on my radar for any one patient? Can we predict what challenges families might need to prepare for down the road? Answering these types of questions will make a big difference for patients because we will better understand how to help them,” Chung says.

Teasing Out the Genetic RootsA long history of studying families affected by autism has confirmed its strong genetic basis. In families with one child with autism, for example, the risk of a second child having the condition can be as high as 20 percent; in families with more than one child with autism, the risk jumps even higher. And identical twins, who share the same genome, or complete set of genes, and fraternal twins, who share about half of their genetic code, are far more likely to develop autism than are different-aged siblings.Genome sequencing has already ferreted out mutations in 65 genes that increase the risk of developing autism, and hundreds of others will likely be implicated as well. Some are passed from the DNA of the mother, the father or, sometimes, from both parents to the child. Others arise spontaneously, meaning they aren’t present in either parent’s genetic makeup.To date, genetic causes have been pinpointed in only about 20 percent of autism cases, usually those that are associated with certain rare diseases, such as Fragile X syndrome or Phelan-McDermid syndrome. But there’s no smoking gun for the remaining cases. It’s still largely unknown which genes drive the development of the disorder. The number of genetic mutations that contribute to autism is manifold, on the order of several hundreds, perhaps even a thousand. That means the likelihood that any two patients will have a mutation in the same gene is very low. In fact, the most commonly mutated gene in autism—a gene called CHD8—is so rare it’s seen in only about 0.1 percent of people with the disorder.And, Chung points out, even among those who do share the same genetic mutations, it’s not unusual for their outcomes to be wildly divergent. In some cases, the same change can cause severe disabilities in one individual but only mild behavioral problems in another. “In a way, you’re looking at many, many rare disorders,” Chung says.Of course, genes alone aren’t to blame. The same family studies that demonstrate autism’s genetic basis also confirm that factors other than genetics, collectively referred to as “the environment,” play a role. “If genetics were the only factor that determined whether a child develops autism, two identical twins, who share the exact same DNA, would always either both have autism or both not have autism,” says Raphael Bernier, an associate professor of psychiatry at the University of Washington in Seattle. He says autism is caused by a combination of genetics and a “vast array” of environmental factors—from a child’s exposure to certain toxins to overweight parents.“Our best guess is that in many individuals, autism is caused by genes interacting with not only other genes but with an unknown number of potential environmental factors too,” says Bernier, whose clinic is participating in SPARK. But which environmental factors actually contribute to autism and by how much remain a hotly debated question SPARK hopes to answer.The study’s success hinges on its ability to amass an army of patients and family members to capture not only the full breadth of autism’s genetic diversity but also the different and unique challenges of each individual with autism. A data set of this massive caliber is also necessary, says Bernier, to see patterns they may not otherwise see in a small group of patients. “A genetic mutation that only occurs in one in every 500 patients could easily be overlooked; in 50,000 patients, that same mutation would crop up 100 times,” he says.“Imagine that all families in SPARK report on the nature of their child’s communication struggles, and then we aggregate these reports and cross-reference them with genetic profiles. Finding genetic commonalities in experiences and how different families manage specific challenges could lead to real improvements,” says Pamela Feliciano, scientific director of SPARK and the mother of a child with autism.Only about 5 percent of children with autism participate in clinical trials, compared with more than 90 percent of children with cancer, for example. In an effort to make study enrollment as easy as possible, SPARK investigators designed the study to enable people with autism and their families to enroll online via a smartphone, tablet or computer, in addition to enrolling study participants at a doctor’s office or clinic. The Newsums—Taylor, Savannah and their parents—were among the first to raise their hand as study volunteers. Each contributed a small vial of saliva to the research project and filled out a medical questionnaire. Eventually, SPARK will return sequencing data and any actionable findings to health care providers of participants who want such information.The project’s success will rely on crowdsourcing the painstaking task of analyzing the tsunami of data that’s starting to come in. Investigators from 21 medical schools and autism research centers across the U.S. have already joined the project, and de-identified data will be made available via a web-based portal to qualified researchers from the scientific community at large. “There could be a brilliant mathematician who has the ability to see patterns and associations that others don’t,” says Chung. “We don’t presume that only investigators who happen to call themselves autism researchers are the only ones who have something to teach us about autism.”SPARK is not the only study that is examining genomic data for a large number of patients with autism. MSSNG—named for the “missing” information about autism—was launched in 2014 by the research and advocacy organization Autism Speaks, in partnership with Google and the Hospital for Sick Children in Toronto. The project aims to mine the DNA of 10,000 people with autism and their family members, and it’s on pace to reach that goal later this summer. MSSNG goes beyond SPARK’s plan of sequencing the exome—it will look at all 3.2 billion letters of genetic code in the human genome to get a more “holistic” view of the genetic underpinnings of autism, says Mathew Pletcher, interim chief scientific officer at Autism Speaks.With more than 5,000 genomes already fully sequenced, the MSSNG data set has allowed scientists to discover new parts of the genome involved in autism that were previously missed, using techniques that look at only parts of the DNA. “It also revealed that the disorder’s genetic underpinnings are way more complex than previously thought,” Pletcher says.Using MSSNG data, a team at the Hospital for Sick Children sequenced, in their entirety, the genomes of 340 people from 85 families, each of which had at least two children diagnosed with autism. The research showed that most siblings who have the disorder have little to no overlap in the same autism-associated genes, turning on its head the long-held belief that siblings with autism had inherited the same autism-predisposing genes from their parents. “In many cases, they have different ‘forms’ of autism, which begins to explain why siblings with autism so often have such different features and why they require distinct approaches to help them manage the disorder,” says Pletcher.Once complete, MSSNG will host its data, along with a suite of data analysis tools, on the Google Cloud platform, Pletcher says, where it will be accessible


Second child

Helping children with autism spectrum disorders face their fears

Children with high-functioning autism spectrum disorders (ASD) are at an increased risk for developing anxiety symptoms. Anxiety comes in many forms, from an acute fear of spiders to persistent worries about making mistakes. When these fears start to interfere with children’s everyday lives, they can have negative effects on school performance, peer relationships and family life.

Recent clinical research suggests that anxiety is treatable in children with ASD, and that the cognitive and behavioral strategies used with typically developing children can be modified for children with autism—with encouraging results. This article provides a set of basic tools to help children with ASD face their fears at home, at school and in their communities.


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  • identify and talk about fears
  • replace worry thoughts with helpful thoughts
  • recognize the body’s signals
  • model positive coping strategies

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  • underestimate your child’s strengths and ability to be brave
  • rush your child’s process
  • allow your own anxiety to get in the way
  • forget to encourage brave behavior and reward efforts to face fears

Do identify and talk about fears

Children with autism often have difficulties recognizing when they are anxious. Sometimes, it takes an adult to help children identify situations that make them nervous, find words to express their feelings and link those feelings to behavior. For instance, if your child is resisting going to school, start by making a reflective comment: “I noticed that you don’t like going to school when you have to give a presentation. Does it make you upset to talk in front of the class?” Children with ASD may dislike words such as “fear” or “anxiety” and may initially feel more comfortable describing their feelings as “upset.” It also may be easier to make a statement about how they might feel rather than ask how they feel such as, “you look upset”. Having such conversations with your child builds a shared vocabulary for talking about anxiety, teaches self-awareness and lets him/her know that experiencing and expressing emotions is acceptable. Over time, this can help you to communicate more effectively with your child about anxiety and avoiding behaviors.

Do replace worry thoughts with helpful thoughts

Anxiety can shift the mind into overdrive. A relaxing visit to the lake can trigger a waterfall of worries: “What if I fall in? What if there are bugs in the water? What if there’s a whirlpool, and I drown?” Your child’s “active mind” can quickly lead him to catastrophize. When these worries come up, coach your child to replace them with helpful thoughts: “I’m a good swimmer. The lake is a safe place, and my parents are here if anything happens. I can do this!” Once you have modeled these helpful thoughts a few times, encourage your child to say them to him/herself so they become internalized and easy to remember in scary situations.

Do recognize the body’s signals

When danger approaches, our body naturally sounds the alarm: a racing heart, sweaty palms, a dry mouth. For children with anxiety, these physical reactions often occur in the absence of real danger, such as when separating from a parent, approaching a group of peers, talking in class or taking a test. Physical coping strategies, such as breathing deep into the belly, help to calm the body’s “fight-or-flight” response. Teaching your child to recognize these symptoms as “false alarms” can enhance self-awareness and calm somatic reactions to fear.

Do model positive coping strategies

Children learn a lot about how to manage emotions from observing adults. When you are feeling stressed, try to label the emotion, identify the body’s “false alarm” and model adaptive coping. For example, when lost on a family drive, talk aloud about your process: “I think I’m a little lost, but that’s okay because everyone takes a wrong turn sometimes. Let me pull over, take a few deep breaths and ask for directions.” Talking aloud may seem unnatural at first, but for children with ASD, it can be helpful to make your internal coping strategies more explicit. Talking aloud allows children to see your steps to success more clearly and to imitate these steps more easily in their own stressful situations. Deep breathing, reading or taking a walk together are all great ways to teach your child simple strategies for managing anxiety.


Do not underestimate your child’s strengths and ability to be brave

Both anxiety and ASD present tremendous challenges, but that doesn’t mean your child can’t rise to the occasion. Often, it takes a parent or teacher’s conviction that their children can in fact face their fears for kids to take the leap. Furthermore, sheltering children with ASD and anxiety from all stressful situations robs them of valuable opportunities to practice their coping strategies and gain the experience they will need in adolescence and beyond. It is natural to want to protect your child, compensate for his/her difficulties and avoid challenging situations. However, at times, this can disempower the child. Instead of sticking exclusively to familiar activities, try a new activity, such as karate or horseback riding, encouraging your child to take gradual, small steps toward full participation. Provide the right tools, structure and support for these experiences at a manageable pace. You may be surprised at your child’s ability to meet life’s challenges.

Do not rush your child’s process

Forcing children with ASD to face their fears before they are ready can reinforce fear and avoidance, and diminish their trust in you as an ally in managing their anxiety. Taking gradual steps is key when helping children with ASD face fears. For example, overcoming social anxiety might begin with guiding your child through role-play dialogues with a family member, and then practicing with familiar peers before attempting to strike up a conversation with a stranger. This “graded exposure” provides a manageable structure for progress to occur, and it gives children multiple opportunities to practice coping strategies and experience success. When the time comes to start a conversation with an unfamiliar peer, your child will have plenty of practice and confidence under his/her belt to take the plunge.

Do not allow your own anxiety to get in the way

Working with children with ASD and anxiety is no easy task, and it is normal to feel stressed at times. Learning to manage your own anxiety is key to helping children with ASD manage theirs. Anxiety influences our behavior in a variety of ways, affecting teaching and parenting styles in ways we may not be aware of—from diminishing our patience to sapping our problem-solving skills. Not only does our anxiety affect our children’s feelings and behavior, but it often keeps us from letting them take on new challenges. Remember that you are a model of bravery and positive coping for your child. Take a deep breath, conjure up your own helpful thoughts and reward yourself with some chocolate now and then. When you are calm, you can model bravery, be more patient with and attuned to your child’s process, and encourage opportunities for your child to face fears one step at a time.

Do not forget to encourage brave behavior and reward efforts to face fears

Children with ASD may be especially motivated by rewards: a favorite food, a prized video game or a special outing to the science museum. Help your child to face his/her fears a little at a time and reinforce the use of coping strategies, such as deep breathing with praise or a sticker. Even small acts of bravery—a socially anxious child inviting her friend over to play or a child with separation anxiety averting a meltdown as his parents leave for a dinner out—represent important steps toward facing fears and deserve to be acknowledged. Reflecting back to your child what he/she has accomplished and linking such accomplishments to rewards not only reinforces brave behavior, but it also lets the child know you are proud of him/her.



Best Yoga For Kids With Autism

Autism in children is a condition in which the child requires a lot of attention and care. Children suffering from autism tend to process experiences in a different way. They are very sensitive to light and sound. Yoga for this condition is known to be quite helpful.

Yoga is recommended for such kids to enable them to relax and calm down. It helps them concentrate on a particular thing and reduces the stimuli that make them anxious. Stretching which is part of yoga technique helps in relieving muscle tension.  A few yoga asanas for autism in children are discussed below.


Counting Meditation

This meditation is very simple and easy to perform. In this, all you need to do is to make the child count backwards starting from 100, 50, 20 etc based on the child’s age.

Counting Meditation

It is important to make the child focus on counting the numbers by enabling the child to imagine the numbers or you could opt for a color to associate with each digit. In order to enable the child to relax, breathing with each number is also advised. This exercise could be performed while sitting or lying down, so that the child feels relaxed.

Volcano Breath

As the name suggests, it is an apt breathing exercise for children during moments of a forthcoming fiasco. In order to perform this technique, make the child to bring his hands in a prayer pose next to his heart. Then make the child gently extend his/her hands straight above and ask him/her to deeply inhale and allow the hands to fall to his/her sides while he/she exhales. This technique will help in relaxing the child by lowering the built in emotions.

Child’s Pose

This asana is referred to as the child’s pose because it resembles the position of the baby inside the mother’s womb. To perform this asana, make the child kneel on the calves with the knees together and then gently ask the child to bend forward gently, so that the head faces the ground and allow the hand to rest on either side.

Child’s Pose

Vrikshasana – Tree Pose

To perform this asana make the child stands erect and arms on the sides. Gently bend the right knee and place the feet of the right leg on the left thigh at mid level. Ensure that the left leg remains straight. Balancing is the key here, so try to make the child balance himself/herself in this pose.


Now, ask the child to inhale and extend the arms above the head and bring the palms together to folded position (Namaste mudra). Let the child look straight and focus on something. The spine should be straight and the long breathing in and breathing out helps in relaxing the body. Now, slowly bring the child back to normal and then repeat the same thing with the other leg.



Almost Autism: Recovering Children from Sensory Processing Disorder

Almost Autism: Recovering Children from Sensory Processing Disorder

I have recovered my two sons from Sensory Processing Disorder (SPD), what I call “almost autism”. I’ve published a book about it, “Almost Autism: Recovering Children from Sensory Processing Disorder“.

One of the problems with SPD is that it’s not an official diagnosis.

As a parent or practitioner, you’re left on your own to get help for a child whose issues you can’t quite put your finger on.

This child doesn’t have autism, but they almost have autism, and they fall through the cracks.

Knowing the confusion and lack of information that parents and practitioners have about the disorder, I set out a clear roadmap in this book for recovering a child from increased sensory sensitivities.

Almost Autism is available on Amazon and on Kindle.

In this book you will learn, in layman’s terms:

  • What the common symptoms of SPD are.
  • What causes SPD: toxicity, gut dysbiosis, immune dysregulation, nutritional deficiencies, adrenal imbalances, thyroid imbalances, inflammation and other factors.
  • How these factors cause neurodevelopmental damage, which may initially show up as retained primitive reflexes.
  • What an MTHFR mutation is and how it affects an SPD child.
  • What are the roles of genetics and epigenetics.
  • What mitochondrial dysfunction is and what to do about it.
  • How to recover a child, step by step, from SPD.
  • How to get a child to sleep better.
  • How to choose and cook foods that will lower stress.
  • How to lower inflammation, a key component of sensory dysfunction.
  • How to control blood-sugar swings that are hidden causes of sensory sensitivities.
  • How to prioritize therapies for sensory integration.
  • Why healing the gut is so important for lowering sensory symptoms and for preparing the body for detoxification.
  • How to detoxify a child safely and gently.

As you read through this one-of-a-kind book, you’ll realize that the world isn’t what it seems. You’ll learn how to think for yourself and, ultimately, how to empower yourself.

I am a former Wall Street equity research analyst who is now a Certified Holistic Health Counselor. I am a Board Member and the Media Director for Epidemic Answers, a 501(c)3 non-profit dedicated to letting parents know that recovery is possible. I am also the Media Director for Epidemic Answers’ Canary Kids Project, which will document the potential recovery of 14 children from autism, ADHD, asthma, atopic dermatitis, juvenile rheumatoid arthritis, mood disorders and type 2 diabetes.

Read What Other Say About “Almost Autism”

“As a pediatrician, I now see more cases of ‘almost autism’ than I do autism itself. These neurodevelopmental challenges continue to rise at an alarming rate, and parents need answers. Maria provides those solutions in the most thorough yet concise guide to healing the body and the mind that I have seen. Her focus on natural and nutritional solutions for gut healing is spot on, and her specific recommendations for the right types of sensory therapies provide parents with the roadmap they need to beat Sensory Processing Disorder.”

  • Bob Sears, MD, FAAP, author of The Autism Book and The Allergy Book

“Almost Autism is a much-needed bridge between the biomedical and sensory aspects of spectrum disorders. It is important reading not only for parents, but also for occupational and speech therapists, educators and anyone guiding families toward health.”

  • Patricia Lemer, author of Outsmarting Autism: The Ultimate Guide to Management, Healing and Prevention, Chairman of the Board, Epidemic Answers

Almost Autism is a compelling personal story that is also a comprehensive guide to recovering your child from Sensory Processing Disorder. Hong’s narrative is accessible, easy to read, and a practical resource for parents who are overwhelmed and confused by their child’s behaviors and symptoms. If you are a parent of a child affected by SPD, or any of the ‘new childhood epidemics,’ this book should be your companion and guide while on the road to recovery.”

  • Beth Lambert, Executive Director of Epidemic Answers, Executive Producer of the Canary Kids Project and author of A Compromised Generation: The Epidemic of Chronic Illness in America’s Children

“Maria has thoughtfully provided a comprehensive map that will guide you through the haze of medical misinformation surrounding an SPD diagnosis. With her practical step-by-step guide, you will leave the fog behind and step into a higher place of clarity and health; not just for your kids, but your whole family! Get started, today!”

  • Lisa Joyce Goes, co-founder of The Thinking Moms’ Revolution, President, teamTMR.org

“In Almost Autism, Maria Rickert Hong has given us a book of amazing depth and scope that explores the complex and often-misunderstood condition knows as “Sensory Processing Disorder.” What makes this book stand out is the way in which she carefully deconstructs the causes of SPD and offers a systematic biomedical approach to treatment, offering options without overwhelming parents. Clearly this comes from her personal connection to this problem as well as her extensive professional expertise. As a holistic developmental pediatrician, I will be recommending Almost Autism as an invaluable resource to many of my families.”

  • Stephen Cowan MD, FAAP, author Fire Child Water Child, How Understanding the Five Types of ADHD Can Help You Improve Your Child’s Self Esteem and Attention

“Maria explains Sensory Processing Disorder and its many facets – the signs, causes, underlying pathophysiology, and treatments – in a way that is easy to understand, well organized and practical to both the layman and health care provider. Maria’s guidance has been essential in helping me recover my own child’s health as well as mine; and I will most certainly be using her book as a reference for my medical practice!”

  • Melissa Crawford, MD, CCFP

“Maria Rickert Hong has managed to write a clear, understandable, yet comprehensive roadmap for parents struggling to help their children. In her fight to heal her own sons she left no stone unturned, and readers not only benefit from reading about her experience, but also are given tools to help in their own struggle. Almost Autism is a tale of hope and a manual for healing.”



When autism parents kill–it has to do with hope

As a parent of twins with autism, I know what it’s like to feel desperate and alone. I know how it feels to have doors close and be left with no one to help carry the load. Professionals go home to their families, most don’t have any idea what it’s like to live with the turmoil. They get to sleep through the night without worrying if their child will harm themselves or wander off.


Maybe you’re reading this and you have a child with autism. Like me, you probably think you’d never entertain the thought of murdering your child, no matter how desperate your feel. But we have to remember that our experience with autism isn’t another parent’s experience.

Don’t get me wrong. I’m not condoning murder in any way shape or form. I think I’m trying to understand the emotions that drive someone to do such a thing.


And I do get it. I do. When you are screaming for help and no one comes, you feel backed into a dark corner of no hope. I believe it’s loss of hope that causes parents to kill their disabled children. At least, I think that’s what happened in the case of Dorothy Spourdalakis who murdered her severely autistic son, Alex Spourdalakis, age 14, last year.  It’s compelling. Sad. And too often a common story regarding severely autistic children.)


But in the case of Gigi Jordan, I’m not so sure. In that case it appears it was a selfish act. Or was it? Could it be true that she killed her son in order to protect him from an abusive father? It certainly can’t be true that she couldn’t obtain services for the child. She’s a millionaire. If she couldn’t obtain services, then who can?

Cases like this are just one reason I was prompted to write a book about autism (My book, Autism: Practical Help and Spiritual Hope for Parents, will be available in April 2015). Parents need to know there is definitely hope in this journey. Hope doesn’t make the road easier, but it makes it bearable.


Autism isn’t who my children are. It’s a name of a disability that causes significant challenges in socialization, speech and behavior. All people with disabilities are precious. planned for and valuable to God. As much as I love my children, I know that God loves them even more, and He has a plan and purpose for their life. I sincerely believe that if we pray and ask God to send us help to cope, and what services to access, He open the doors. At least, that’s what He’s always done for me.


As I wrote in my book:

“With God all things are possible” Matthew 19:26. I clung to that scripture and believed it the entire time
my twins were growing up and I continue to hold on to it today. Things I thought they may never do, they’ve done. More than I ever imagined.

God’s Word tells us that we can’t begin to imagine what He  has in store for us (1 Corinthians 2:9). I can testify to this.

I will admit, when I see children suffering, I have a lot of questions for God. This is when I lean on the faith that God knows what He’s doing and He is up to something good, whether we see it right now or not.


As a Court Appointed Special Advocate (CASA), I see children suffer more than I want to. Life is hard and I certainly don’t want to minimize anyone’s pain. I know what it’s like to feel alone and hopeless. This is why it’s important that Christians reach out to hurting families. If they reject our offers of help, then at least we’ve tried. Without the hope of Christ, what hope is there, really?


All human life is sacred because we are created in the Image of God. Murder is never the answer to the frustrations of parenting a child on the autism spectrum or a child with any kind of disability. Yes, it’s difficult. But it’s do-able. More than that, it’s the most rewarding thing I’ve ever done. The struggle has been worth the benefits. My sons love me with the purest form of unconditional love I’ve ever known besides Jesus’ love. They are truly God’s gifts to me


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My Son Has a Kind of Autism That No One Wants to Talk About This


The piece is written by the mother of a boy who has the “kind of autism that no one wants to talk about”.  And the kind of autism she means isn’t high functioning autism. Her article was written in response to a lawsuit in California where the family of a boy with autism, with similar behaviours to her own son, is being sued by several families in their neighbourhood. The lawsuit argues that their child is a “public nuisance” because his behaviour is out of control and that the safety of their children is at stake. They also claim that his parents have taken no responsibility for his actions nor have they done anything to remedy his behaviour. “For us this case is not really about autism,” said Robert Flowers, one of plaintiffs.

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According to the author of the article “This is absolutely about autism. It’s just not about the autism people hear about”. She wrote about her own son who ran after children in the playground with the sole purpose of  knocking them over. Her son hit, kicked, pulled hair, hugged her sometimes and other times hit her.  She spoke about the isolation of autism and about eventually having to withdraw from society so that she could keep other people safe from her son. She shopped at 6:00am when there would be less people around. She touched on the subject of play date invitations being revoked as soon as she explained the issues her son had and her shame at that.

She concludes her article with the words “We can open our eyes and understand that autism isn’t all about the high functioning child who is “quirky” but OK to be around. Autism isn’t all about the six-year-old who can play Piano Man better than Billy Joel. Autism can be hard. Autism can be sad. Autism can be messy. Autism can be violent. Autism can be isolating”. She is right on all those counts.

I remember when my first daughter was diagnosed with Aspergers Syndrome four years ago. My first instinct was to protect her and to keep her diagnosis from society. I felt that if word of her diagnosis got out, she would be treated like an outcast. I even contemplated keeping it from her teachers. I couldn’t help feeling this way. I still remember sitting in the room after her diagnosis as the psychologist and speech therapist were still talking. I was miles away. I can only liken it to being in a swimming pool and hearing voices but not really tuning in to what they were saying. I had thought she would prove them wrong that day. I thought her teacher was over-reacting. I couldn’t believe it but deep down I knew that her behaviour and that of her twin sister at times weren’t altogether typical. I wasn’t expecting a diagnosis on the autism spectrum though. The only autism I was familiar with was severe autism in my extended family.

My girl has high functioning autism. She is a highly intelligent, articulate, witty and affectionate little girl as is her twin sister who was later diagnosed with ASD level 1. They are the “quirky” type that the author mentions. They have so many talents but that is not to say that they don’t find life hard and that they don’t have their challenges.  They might be “ok to be around” most of the time but when things get too much for them, they can be difficult to be around. Thankfully the latter is becoming less and less as time goes on as we continue to work with them to enable them to achieve everything they are capable of achieving.

Back a few years ago, we thought we could continue to keep their diagnoses a secret. We couldn’t.  They were different to their peers. When they went to parties, I was always worrying about them. I found myself having to explain before the party that they might want to go off and be on their own when it got too loud or too claustrophobic for them. That they might get overwhelmed. That they might get upset. Most parents are very understanding and almost intuitively knew that our girls needed a bit more space but there were others who struggled to get it. There were times when I had to collect them early with parents watching on, some pretending not to notice, some looking sympathetically and some staring. It was hard and I wished life could be easier for them and easier for us too, if I am to be honest.

I took a big gamble but felt that I owed it to my girls to put their story out there. The real story. I wanted to give those who thought they knew my girls an insight into the life of my girls and not the life they thought or assumed they had. People who saw the girls upset at parties or in public places assumed that they were like that all of the time. People who had never met my girls had an opinion of them that wasn’t completely accurate either.

The gamble to publish the piece about my girls paid off. People really responded to their story and in a good way. People were more understanding and suddenly the girls started to get invited to more parties. When they were allowed to just be themselves (which they were after I wrote my blog post!) they came home on a high and I got no phone calls to collect them early. I will always be grateful to the parents who included my girls and took that little bit of extra time with them so that they could enjoy parties with their peers in their own way.

When the word autism is mentioned, generally people tend to think the worst. Sometimes life with autism is a very difficult and neverending road but sometimes with the right interventions children diagnosed with autism can make huge leaps and go on to live a very full life.

When the girls were first diagnosed, I joined a group on Facebook for women on the autistic spectrum. Through this I have met and spoken to many articulate and bright females who have autism. Many are mothers with their own children.  One such lady is Fiona O’Leary who was diagnosed with Aspergers at 42. She always knew she was different. Like many who have been diagnosed with autism in adulthood, it can be a relief to finally have an explanation. Fiona has appeared on TV and has written numerous articles about autism as well as being an autism advocate. She has five lovely children of her own and is married to Tim.

Adam Harris, founder of AsIAm.ie who also has Aspergers is living proof that intervention is invaluable to any child with autism. I have heard Adam tell his story and stand up in a crowded room to do so. He is amazing.  He travels the country as an autism advocate to create a better awareness of autism and is an inspirational speaker. When you see how eloquent Adam is, it is hard to imagine that he spent three years of his primary education in a school for autistic children before being eventually integrated to mainstream school. Adam was lucky to have got the necessary interventions required to help him flourish. Not every child is so lucky. Waiting lists continue to lengthen and it is so sad that children who need immediate early intervention are having to wait for more than a year for an appointment for assessment with another wait for the necessary help. My girls have been three years on a waiting list for occupational therapy. Ireland has let down many of it’s future generation already and continues to do so. Parents of children with autism are often too tired to fight, some never getting a full nights sleep. They shouldn’t have to then fight for services for their children nor should they have to try to scrape enough money together for private therapies either. Their children deserve to be looked after. They deserve better. As journalist Brendan O’Connor recently said on live TV, the lack of support for people who have disabilities will cause Ireland to be called an “inhumane culture” in years to come.

When I wrote Double Trouble about my girls, I wanted to give hope to parents of newly diagnosed children with autism, if I could. Back in 2012, all I wanted to do was talk to someone with a positive story to tell about autism.  It is very hard, at first, to be optimistic for the future when you get a diagnosis of autism for your child but I yearned for a happy ending. I wanted to talk to a mother who had been in my situation but was now in a better place. The principal at the girl’s school very kindly put me in touch with that person. She was a few years ahead of us in that her son, with high functioning autism, was then heading into his teenage years. She didn’t paint it in any other way than what it was – tough at times but that everything wasn’t going to be all doom and gloom. That phone call really boosted me and helped me to get focused. I was in shock for six months after the first diagnosis but that phone call spurred me into action to start putting things in place for the girls, including getting my second girl a private assessment.

I have been very vocal about autism because I want to raise awareness about autism. My only experience of it is being a mother to girls with high functioning autism so that is all I am really qualified to talk about. It is an absolutely massive spectrum and no two people with autism are the same. My girls are not the same. They couldn’t be more different. The life we have with our girls compared to the life of the parents of a child who has severe autism are very different. Of course we have to put in that extra effort with our girls to help them reach their true potential but we do feel very lucky that our girls are overcoming many of their obstacles. They are only getting better as they get older. This is not the case for every family unfortunately.

Our girls are really doing great now, but new challenges always arise. The one constant is that as parents we worry but at the same time try to keep a positive outlook on how they will do in the future.

Our autism journey and the journey of the author in the post above are very different but in some ways they are similar too. We used to have to avoid certain outings with the girls when they were younger. There are some things we still have to avoid but we try to make their lives as varied as possible. It means that they are better able to deal with sudden change.  Life is not going to stay static so we would be doing a diservice to our girls if we tried to keep everything the same for them. I’m sure there are lots of things we could or should be doing but there is no handbook you get when your child gets a diagnosis of autism. You’re very much left to your own devices in this country. We can only continue to do our best and hope that that is good enough in the end.

Whatever level of the autistic spectrum you’re dealing with, it is tough for the child and it is very real for the child and the parents.  Our experience of autism is a positive one. Our girls have come so far and are continuing on their journey to reaching for the stars. The sky is the limit for them. Positive stories need to be told and I like to keep a positive outlook. However, the very difficult stories need also to be told. If in the media we only approach autism in the context of the positive stories then we miss the terribly harsh reality of children and parents at all ends of the spectrum.

To conclude, we all need to be more autism aware. We need to be aware of the triumphs, the struggles and the individually unique experiences that every autistic child has. We need to remember that every autistic person has their own challenges but that some have more than others. We need to, as a nation, start fighting for children who are being neglected by the state instead of leaving it up to the exhausted parents of the children that need these services to help them be as good as they can be.

We as parents are immensely proud of our girls. We would love to be able to continue to protect them into the future but that isn’t always possible and we know that it’s a hard and cruel world out there. Our job is to put in the ground work now so that as many doors as possible open for them in the future. We can’t depend on the state to do it for us as services are so limited. Our girls have a lot to offer society and as Adam Harris has said “autism certainly makes life harder – but diversity also makes societies flourish”.



Autism and apraxia: the importance of screening for both

Researchers find otherwise rare speech disorder affects nearly 65 percent of children with autism; call for screening and treatment

A new study finds that the relatively rare speech disorder apraxia affects nearly 65 percent of children with autism. The finding is important because apraxia warrants a specific type of therapy not otherwise part of an autism intervention program.

“Children with apraxia have difficulty coordinating the use of their tongue, lips, mouth and jaw to accurately produce speech sounds, so that each time they say the same word, it comes out differently, and even their parents have difficulty understanding them,” explains developmental behavioral pediatrician Cheryl Tierney, of the Pennsylvania College of Medicine.

Dr. Tierney co-authored the new report, in the Journal of Developmental and Behavioral Pediatrics In it, she and her colleagues emphasize the importance of keeping both conditions in mind when evaluating a child for either one.

The researchers assessed 30 children, ages 15 months to 5 years, seen at their developmental communication clinic. Their follow-up testing showed that 64 percent of the children initially diagnosed with autism also had apraxia, and 37 percent of the children initially diagnosed with apraxia also had autism. By contrast, apraxia occurs in just 1 or 2 out of 1,000 children in the general population. Autism affects 1 in 68.

Developmental experts have long noted autism and apraxia frequently coincide. The new study, though small, underscores just how commonly this overlap may occur.

Both conditions can be improved with early intervention, though each warrants a different intervention. In particular, the researchers emphasize that nonverbal children diagnosed with either autism or apraxia should continue to be screened for the other condition until they start talking.

“Children with autism frequently present with communication challenges including delayed speech and language development,” notes speech-language pathologist Donna Murray, senior director of the Autism Speaks Autism Treatment Network (ATN). “Speech-language pathologists are trained to identify the signs and symptoms of apraxia and will be able to assist families of children with autism in understanding the nature of their child’s communication delays and develop an intervention plan to treat apraxia if needed.”



An overdue query in autism science: What, exactly, is autism?

Fragile X syndrome, tuberous sclerosis (TSC) and Williams syndrome are rare conditions with clear genetic causes: Each springs from a mutation in a single gene — and with unusual frequency seems to simultaneously produce a more common condition: autism1.

But is the ‘autism’ in a child with Williams syndrome the same as in a child with fragile X? And how does it compare with autism of unknown causes?

“This is a really difficult question because — is it the same thing as what? We don’t have a model autism case,” says Bonita Klein-Tasman, professor of psychology at the University of Wisconsin-Milwaukee. “We have a pretty broad umbrella of what we consider to be autism right now.”

In terms of genetics, autism research is much more sophisticated than it was just a few years ago. Scientists have identified a few dozen genes that seem to be important players, and are hot on the trail of these genes’ malfeasance. But along with this increasing clarity, an existential crisis is emerging: What, exactly, is autism?

“Certain folks think that autism is a thing,” says Raphael Bernier, associate professor of psychiatry at the University of Washington in Seattle. “I don’t think so. We’re defining it a certain way and there are a lot of different ways to get there.”

Social subtlety:

Some element of this uncertainty has always accompanied autism. Note the common saying: “If you’ve met one child with autism, you’ve met one child with autism” — a testament to the condition’s maddening diversity.

Some children with autism are social but awkward; others are socially withdrawn. Some don’t speak at all; others are hyperverbal. Some tune out all distractions and can focus intensely; others seem hyperactive and easily distracted.

The advances in genetics over the past few years have only confirmed this variability. As researchers identify people with autism who share the same rare genetic mutation, they are finding that each subgroup has its own distinct profile, with differences even among members of the same subgroup.

“If we had good clinical data on 50 patients for each of the 500 or more predicted single-gene causes of autism, they’d probably all have a different profile,” says David Ledbetter, chief scientific officer at Geisinger Health System in Danville, Pennsylvania. “They’ll each have their own social communication and cognitive profile.”

Bernier brings children to his clinic from all over the world who bear rare mutations in any of a set of genes strongly linked to autism. Grouping these children by the mutation they carry, he paints portraits of their common features. For example, children with a mutation in CHD8 tend to have wide-set eyes, large heads and trouble socializing. Many of them have what Bernier describes as “waiting-room autism” — meaning their autism can quickly be identified by sight alone: “I’m seeing a kid who is not engaged with others, who is not using broad facial expressions, not making eye contact.”

By contrast, children who carry a deletion in the 16p11.2 chromosomal region seem interested in socializing, but awkward, Bernier says. “Many of them have social quirks and oddities, but they’re not that waiting-room autism,” he says. “They are socially motivated and engaged but don’t know what to do once they are engaging with someone.”

Unknown origins:

Estimates of the genetic contribution to autism vary widely. One study, published this year, indicates that as much as half of all cases of autism derive from harmful, spontaneous mutations in single genes2. Other estimates suggest a more significant role for combinations of milder mutations present in the general population3. No single autism-linked mutation seems to contribute to more than about 1 percent of autism cases, however.

For years, many researchers considered idiopathic autism — meaning autism arising from unknown causes — to be separate from the condition seen in genetic syndromes such as fragile X or Williams (see graph). That perception is changing.

Contiguous conditions: A meta-analysis of 158 different studies generated prevalence rates of autism across 16 genetic syndromes (11 shown here). The analysis weighted studies based on the number of participants and rigor of diagnostic methods used. Nigel Hawtin

Contiguous conditions: A meta-analysis of 158 different studies generated prevalence rates of autism across 16 genetic syndromes (11 shown here). The analysis weighted studies based on the number of participants and rigor of diagnostic methods used.

Nigel Hawtin

“In the past, people used to segregate syndromic autism from idiopathic, or ‘pure,’ autism. It’s pretty clear that this distinction is getting blurred now,” saysMustafa Sahin, associate professor of neurology at Children’s Hospital Boston. “At the neurological and circuit level, it seems that they are converging.”

One reason why disorders such as fragile X syndrome seem only peripherally related to autism is that not everyone with a mutation in the fragile X gene has autism. But as researchers identify more autism mutations, it is becoming clear that this variability in symptoms may be the rule rather than the exception.

For example, only about 25 percent of people with a deletion in the 16p11.2 chromosomal region have autism. But a closer look reveals that all of them have social deficits when compared with their parents, says Ledbetter

Klein-Tasman works with children who have both autism and Williams syndrome, a disorder characterized by excessive sociability and intellectual disability. Some of these children display autism traits — social communication challenges and repetitive behaviors — well in excess of most children with Williams syndrome, says Klein-Tasman. This is often the case with other syndromes as well: The children who meet the bar for an autism diagnosis have more severe social deficits or repetitive behaviors than those who have only the related syndrome.

In these cases, Klein-Tasman says, more than one gene may be at play. “My hypothesis would be that these [more severely affected] kids have a double hit,” Klein-Tasman says. “They have Williams syndrome and probably some other vulnerability for an autism spectrum disorder.”

Clinicians often stop looking for mutations once a child has tested positive for a known genetic syndrome. But a few researchers are taking a second look at these cases. For example, Thomas Bourgeron at the Institut Pasteur in Paris is sequencing the entire genomes of people known to have one strong autism mutation, with the goal of uncovering additional mutations.

Predictive patterns:

Adding to the complexity in studying autism’s shape is the fact that its symptoms may change as children grow up.

In a 2009 study, Klein-Tasman and her colleagues found that more than half of 30 children with Williams syndrome have autism diagnoses at ages 2 to 55. But an unpublished study from the same team shows that once children can speak in phrases, the proportion of autism diagnoses drops to around 25 percent. This may be because as children begin talking, their interest in socializing becomes more apparent.

To get a better picture of autism, researchers should focus on how it evolves over time, Klein-Tasman says. “We tend to get these snapshots of a single point in development. Maybe what we’re going to find is there’s a prototypical autism in the developmental trajectory.”

Following children during development may also help reveal how autism emerges in the brain. Sahin is exploring this question in children with TSC, a condition marked by benign tumors throughout the brain and body.

Roughly 50 percent of children with TSC develop a characteristic form of autism, says Sahin. Studies suggest that brain patterns in children who have both TSC and autism are more typical of children with autism alone than they are of children with TSC alone

Sahin and his colleagues are scanning the brains of 120 children with TSC from infancy to 3 years of age, when they can be reliably assessed for autism. It may be that disparate ways of arriving at autism lead to a similar set of changes in the brain, Sahin says.

This study, along with many others, aims to uncover a biological indicator of autism. The researchers hope to pin the condition down with more than just the behavioral assessments currently used.

“We’re defining autism as impairments in social communication interactions or repetitive behaviors that someone deems to be problematic,” says Bernier. “It’s so tricky, because when you define things behaviorally like that, it makes it difficult to say what something really is.”



10 things autism parents don’t want you to say

“I hate when I tell people I have a son with autism & they say, “I am sorry.” Why??? I couldn’t imagine him any other way…” ~Alice

“I honestly hate it when someone compares my daughter (with severe classic autism) to another child on the spectrum. No 2 children on the spectrum are the same. I wish people would understand and respect that.” ~Claude

“But he looks normal” … drives me nuts!” ~Mickie

“The one that gets me is ” but she is so beautiful…you can’t even tell.”  ~Jennifer

“Hey your kid talks, how do you know he has autism?” ~Karen

“I can’t stand it when people talk like my daughter will never move out or marry because of autism. If she chooses to stay at home with us that is fine. I am okay with it because I love her. But I cannot stand for complete strangers to imply it’s not a choice as though she will never be able to excel.” ~Susan