Autism

by Jessica Wright

Fifty years ago, few people had heard of the term ‘autism,’ let alone known anyone with a diagnosis. Not surprisingly, many adults with autism over the age of 50 have never been diagnosed; others received their diagnoses late in life.

In either scenario, these adults enter old age facing a loss of independence that comes with unique challenges — ones that society is ill-prepared to address.

An article I wrote last year highlights how little we know about aging with autism. Since then, however, there have been a smattering of studies aimed at better identifying and understanding autism and aging, along with a spate of editorials about how sorely such studies are needed.

In most countries, a diagnosis of autism might help people gain access to support services — such as visits from aides, which can make living on their own possible. And knowing that someone has autism could help others understand why certain routines, for example, may be critical for that person’s well-being.

In a rare study looking at older adults with autism, Hilde Geurts, a neuropsychologist at the University of Amsterdam, followed up on the observation that many of the men and women she sees in her autism clinic also have depression. This suggested to her that older adults with depression warrant a closer look for signs of autism.

Her study, published late last year, revealed that 31 percent of adults between 60 and 90 years of age who have depression also show signs of autism, compared with only 6 percent of older adults without depression.

“Most people still think that if [someone has] autism, it should have been diagnosed early in life, because it can be,” Geurts says. “When there is indeed someone with a long history of depression and difficulties in life, you still need to think about a diagnosis of autism.”

Coping skills:

Geurts and her colleagues are following a group of older adults with autism to see whether certain skills track with depression. They’re particularly interested in whether depression might stem from a sense of helplessness in one’s daily life.

“We want to see whether mastery — whether you can make your decisions yourself — has an influence on how strong the relationship between autism and depression is,” she says.

In a study published last week, Geurts and her colleagues documented the prevalence of psychiatric disorders and symptoms in a group of 344 adults, 172 with autism. The study included 48 older adults with autism — individuals between 55 and 79 years of age.

Interestingly, psychiatric symptoms were less prevalent among the older adults with autism than the younger ones. The researchers found the biggest discrepancy with social anxiety, suggesting that adults with autism are developing ways to cope with social situations over time.

The independence that allows adults to develop these coping skills is often hard-won. But independence fades, often dramatically, with age, as physical and mental capacities wane. For people with autism, who often cherish their self-determined routines and even solitude, the decline can be especially traumatic. A number of adults with autism are now voicing these fears.

Mandatory bingo:

“The isolation that many people on the spectrum experience due to social and communication difficulties is likely to worsen with age,” Susan Dunne, a woman with autism in her early 50s, wrote in a blog post for The Guardian. “Having a chirpy care worker turn up at unexpected hours to make small talk and suggest joining bingo at the day centre is unlikely to be of benefit, however well meant.” Her perspective echoes the sentiments in many comments made in response to my article and others like it.

Researchers are aware of these problems. But because so few elderly adults have an autism diagnosis, healthcare workers have little experience helping them navigate the pitfalls of old age. And the unusual needs of most elderly adults with autism are likely going unrecognized and unmet.

“What happens when you’re in a nursing home and the nursing assistant may change every shift, and put you through a different routine?” asks Joseph Piven, professor of psychiatry at the University of North Carolina at Chapel Hill. “How to care for these people is not at all clear.”

Figuring out how best to look after adults with autism is not easy, but researchers are finally taking strides toward solutions. The first step is acknowledging that autism exists in this older generation. The next steps will involve pinning down what autism looks like in these older adults — and applying that knowledge to help them adjust to aging.

Families struggle to find, or invent, good supported living options

By Beth Arky

When Susan Senator’s son Max was racing toward the high school finish line, he joined the rest of his classmates for the usual rites of passage. He took the ACT and applied to good schools, landing at New York University’s prestigious Tisch School of the Arts.

But things couldn’t have been more different for Max’s brother, Nat, 2. Senator, a blogger, memoir writer and novelist, had to take into account the fact that her profoundly autistic older son, while very competent when it comes to self-help skills like showering and dressing, is also limited verbally, cannot handle money and still doesn’t look both ways when crossing the street.

In other words, she knew he needed a 24-hour caregiver to be safe. But because the infrastructure and services aren’t in place to create the type of living arrangement she wanted for Nat after he came of age, she joined the growing ranks of parents who are struggling to make short- and long-term provisions, often taking matters into their own hands.

Parents whose children were among the first wave diagnosed with autism—as well as those with younger children who see the future fast approaching—are confronting new challenges for their kids’ adulthood. They’re facing the harsh reality that when these children—200,000 of them over the next five years, according to one estimate—reach 21 or 22, depending on the state, all the educational supports and services they have been receiving under the federal Individuals With Disabilities Education Act (IDEA) will vanish.

Aging out of services

This forced transition, called “aging out,” pushes them into the woefully lacking system for disabled adults. And it’s not just those with more severely disabled children who are worried. Parents whose children are termed “high-functioning,” including those with an Asperger’s diagnosis, have reason to be concerned that their kids—who may be dealing with things like ADHD, anxiety and sensory issues in addition to their social and communication delays—are not going to magically stop needing support after they reach a certain chronological age.

Liane Kupferberg Carter’s autistic son Mickey turns 20 in July and, Carter, who has written much about the challenges of raising a child on the spectrum, admits to floundering.” I don’t know how to do this,” she says. “When our son Jonathan was preparing to leave home for college, we had a whole shelf of books to guide our family.” But there’s no such book guiding Carter as she faces the next step with her verbal but cognitively challenged son, diagnosed with PDD-NOS. “We’re making it up as we go,” she says. Carter is certain of only one thing for Mickey, who likes to camp it up in a pair of Groucho Marx glasses: Due to his cognitive challenges and autism-related epilepsy, which is only partially controlled by medication, he will always need a supervised living situation.

Kristina Chew, whose 14-year-old son, Charlie, is on the more severe end of the spectrum, proposes that school should continue for the developmentally disabled until they are 25, which would take into account their delays and help families “staring at an abyss” when a child turns 21. “We have learned so much more about autism and the different developments, abilities and needs of autistic individuals in this past decade,” she writes. “Let us try to use this knowledge to provide the best outcomes and the best lives for individuals with developmental disabilities at every age.”

Planning starts at 14

Senator says parents often begin panicking when their kids hit 14 and transition planning starts coming up. IDEA requires every state to begin this process for all students with an Individualized Education Program (IEP) by age 16, and some states require that school districts start the process as early as 14. During the annual IEP meeting, the focus shifts to more specific planning and goal-setting for the transition into young adulthood. Goals might include things like post-secondary education, vocational training, and independent living. Autism Speaks also provides a Transition Tool Kit, which offers guidance on everything from housing to Internet safety.

When it came to Nat, Senator created a shared living arrangement. It’s like a group home, except that there’s a live-in caregiver, which Nat qualifies for due to his level of disability, as opposed to rotating staff. “The idea is that it’s just like home,” Senator says. “He’s got to do the groceries, clean and do the laundry,” assisted by another part-time caregiver. Nat shares a house not far from his family with another young man with similar issues; that man’s family owns the house and Nat rents from them.

The families secured donated furniture; the rest was paid for out of the two young men’s budgets. Friends have been able to watch Nat’s story unfold—complete with pictures—on Senator’s Facebook page, including their shopping trip to Pier 1 for a pillow, a lamp and a rug. “Nat chose aquas, very wild stuff!” Senator says. “I had no idea!” Other parents have followed the project closely, seeing it as a possible template.

Working with a job coach

Nat works three days a week, sharing a job coach with two other young men. This coach, paid for by a state allocation, looks out for Nat at his job at CVS stocking coolers, making sure he understands what he is expected to do and stays on task. He’s also about to start a trial run at a second job retrieving shopping carts at a grocery store. Currently Nat spends the other two days inDayHab, short for Day Habilitation Services, meant to help people with developmental disabilities improve or maintain their independent living skills.

 “DayHab is often babysitting,” Senator says, “table top activities, coloring, television or sheltered workshops, with very little out in the community, and there’s a mixture of disabilities.” This isn’t true of Nat’s program, she says; all of his “colleagues,” as Senator terms them, are developmentally or intellectually delayed, possibly due to autism or Down syndrome.

Half of Nat’s funding comes from the state, half from Medicaid. After he’s given a budget for rent, living expenses, transportation and his job coach, the family works with Nat’s service provider to “come up with ways to stretch the money,” Senator says. The family pays for extras like a recent three-day outing with a social group to New Hampshire.

Group homes create families

Barbara Fischkin also helped create a home for her son Dan. She first shared the story of his “miracle” group home—funded by the U.S. Department of Housing and Urban Development and run by the Nassau County Chapter of AHRC, a nonprofit group—two years ago. Then, she described it as a “newly renovated house on Long Island—a place I call the frat house. Actually, it is a beautiful and smartly designed home that could be a model for such endeavors nationwide. And the guys, who are in their 20s and 30s, are all at the age when leaving home and family and striking out on your own—even if you need lots of staff to help—is something one yearns to do.”

Two years later, she reports that Dan, now 24, and his three housemates “become more like a family all the time. The guys look out for one another.” Dan is still not verbal and has an aide most of the time “but is making great progress with independent typing.”

Laura Shumaker is another parent who has successfully transitioned her autistic son, Matthew, whose childhood and adolescence she recounts in her memoir A Regular Guy: Growing Up With Autism. Matthew, now 25, lives in the Camphill Community in Santa Cruz, a supported living program Shumaker describes as “flexible and dynamic.”

Matthew has been in a day program with social skills help, volunteer work and vocational training outside of Camphill, but is soon transitioning to two days’ a week job training for garden/landscape work and three days’ a week work with a job coach. “We are also building social activities into his program,” Shumaker says. The program is funded through the nonprofit Regional Center of California, but given the state’s budgetary problems, the family needs to make a sizable donation each year.

Option include day programs

Meanwhile, some parents of young children are already researching options. Chew has put Charlie on a waiting list for state housing but is thinking the ideal immediate plan will involve a part-time job with a good day program.

She writes that her new “‘hobby’/obsession” is finding something comparable to the county school for autistic children, which he loves and where he learns daily living and vocational skills. But this appears to be difficult if not impossible, she says. “I know the day that yellow bus does not pull up in front of our house will be a tough one.”

Chew is well aware that funding shortages make her idea of extending special-needs services to 25 a pipe dream. But she also knows that the dearth of options leads many parents to keep these young people at home, often idle and lacking the structure, routine and calm those with ASD need to do their best.

Because Charlie had a lot of ABA (applied behavior analysis), Chew says, he has more skills than he might otherwise. She envisions her athletic son, aided by a job coach, folding towels, sorting recycling items, or working in a park, sweeping leaves. But she feels he might also have “major behaviors. As a 6-foot-tall adult who can’t really read, I don’t think he’d be happy in a room with a TV set doing arts and crafts.” She worries he might end up in a setting like the “awful” after-school program she tried once: “It was a cinderblock building with old furniture. Half were kids, the other half really disabled adults who were there all day in a sheltered workshop.”

She’d be all right with Charlie living at home until he finds housing he likes, ideally in a group home in a community with 24-hour staff and two or three other disabled adults. But she also really likes a couple of other models she’s seen. One Texas couple plans to move out of their house and turn it into a group home for their child and other adults with disabilities. And in California, a group of families created a center in what she describes as a mini-condo complex. Two disabled adults live with one or two staff members; it’s not quite in a neighborhood but they have their own apartment. “It’s going to be created as you go,” Chew says of Charlie’s future living arrangement. “I’m relying a lot on my family. We’re Chinese, and we have the ethic of taking care of the family.”

Self-contained communities

Margrét Dagmar Ericsdóttir is another mother who wants to be sure that services are there for Keli, her 14-year-old nonverbal autistic son, when she’s gone. Her high-profile Golden Hat Foundation, founded and directed by actress Kate Winslet, is the result of that simple wish. Of course Ericsdóttir’s plans for a campus that will embrace nonverbal autistic children is a long way off; it’s in the early planning stages and much fund-raising must be done.

But the sort of self-contained campuses proposed by the Golden Hat Foundation are themselves the subject of debate. Self-advocates like Ari Ne’eman, president and co-founder of the Autistic Self Advocacy Network (ASAN), feel strongly that smaller, inclusive settings are better for their adult autistic population. Ne’eman finds the prospect of a segregated campus very concerning. Commenting online about the Golden Hat plans, he cited “a wealth of research which shows that people have less safety, less choice and less opportunity to interact with the broader community in such settings.”

With the number of children believed to have an autism spectrum disorder continuing to rise, it’s clear that more living, working and support options are greatly needed for them once they lose their special schooling and services. What’s also clear: Both adult self-advocates and parents must be part of the process, providing input as to what those options should be.

History

Asperger’s syndrome (also known as Asperger’s Disorder) was first described in the 1940s by Viennese pediatrician Hans Asperger, who observed autism-like behaviors and difficulties with social and communication skills in boys who had normal intelligence and language development. Many professionals felt Asperger’s syndrome was simply a milder form of autism and used the term “high-functioning autism” to describe these individuals. Uta Frith, a professor at the Institute of Cognitive Neuroscience of University College London and editor of Autism and Asperger Syndrome, describes individuals with Asperger’s as “having a dash of autism.”

Asperger’s Disorder was added to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) in 1994 as a separate disorder from autism. However, there are still many professionals who consider Asperger’s Disorder a less severe form of autism. In 2013, the DSM-5 replaced Autistic Disorder, Asperger’s Disorder and other pervasive developmental disorders with the umbrella diagnosis of autism spectrum disorder.

Characteristics

What distinguishes Asperger’s Disorder from classic autism are its less severe symptoms and the absence of language delays. Children with Asperger’s Disorder may be only mildly affected, and they frequently have good language and cognitive skills. To the untrained observer, a child with Asperger’s Disorder may just seem like a neurotypical child behaving differently.

Children with autism are frequently viewed as aloof and uninterested in others. This is not the case with Asperger’s Disorder. Individuals with Asperger’s Disorder usually want to fit in and have interaction with others, but often they don’t know how to do it. They may be socially awkward, not understand conventional social rules or show a lack of empathy. They may have limited eye contact, seem unengaged in a conversation and not understand the use of gestures or sarcasm.

Their interests in a particular subject may border on the obsessive. Children with Asperger’s Disorder often like to collect categories of things, such as rocks or bottle caps. They may be proficient in knowledge categories of information, such as baseball statistics or Latin names of flowers. They may have good rote memory skills but struggle with abstract concepts.

One of the major differences between Asperger’s Disorder and autism is that, by definition, there is no speech delay in Asperger’s. In fact, children with Asperger’s Disorder frequently have good language skills; they simply use language in different ways. Speech patterns may be unusual, lack inflection or have a rhythmic nature, or may be formal, but too loud or high-pitched. Children with Asperger’s Disorder may not understand the subtleties of language, such as irony and humor, or they may not understand the give-and-take nature of a conversation.

Another distinction between Asperger’s Disorder and autism concerns cognitive ability. While some individuals with autism have intellectual disabilities, by definition, a person with Asperger’s Disorder cannot have a “clinically significant” cognitive delay, and most possess average to above-average intelligence.

While motor difficulties are not a specific criterion for Asperger’s, children with Asperger’s Disorder frequently have motor skill delays and may appear clumsy or awkward.

Diagnosis

Diagnosis of Asperger’s Disorder has increased in recent years, although it is unclear whether it is more prevalent or more professionals are detecting it. When Asperger’s and autism were considered separate disorders under the DSM-IV, the symptoms for Asperger’s Disorder were the same as those listed for autism; however, children with Asperger’s do not have delays in the area of communication and language. In fact, to be diagnosed with Asperger’s, a child must have normal language development as well as normal intelligence. The DSM-IV criteria for Asperger’s specified that the individual must have “severe and sustained impairment in social interaction, and the development of restricted, repetitive patterns of behavior, interests and activities that must cause clinically significant impairment in social, occupational or other important areas of functioning.”

The first step to diagnosis is an assessment, including a developmental history and observation. This should be done by medical professionals experienced with autism and other PDDs. Early diagnosis is also important as children with Asperger’s Disorder who are diagnosed and treated early in life have an increased chance of being successful in school and eventually living independently.

Thursday November 7, 2013

Avoiding eye contact is one of the earliest symptoms of ASD

“Autism can be identified in babies as young as two months, early research suggests,” BBC News reports. Using eye-tracking technology, researchers claim to have identified subtle differences in the way affected babies respond to visual prompts, it says.

The news was based on a small study involving baby boys thought to be at high risk of autistic spectrum disorder (ASD) due to them having a brother or sister with the condition (around one in 20 cases of ASD are related to family history).

By monitoring the eye movements of babies from two months to 24 months old, while they were shown videos of a female actor inviting them to play, the researchers found that children who were subsequently confirmed as having ASD had more limited eye contact than their peers.

The researchers found that the average level of eye looking (in other words looking at the eyes of the actor on-screen) was the same in both groups at two months, but after this time the ASD group had reduced eye contact.  

The researchers did not suggest that this will be a new test for ASD in babies – a diagnosis of ASD is made by looking at a wide range of tests and behavioural interactions, usually from the age of two (see box).

Encouragingly, if eye contact is normal at two months, other functions may also be normal. So, with early intervention, it may be possible to prevent ASD developing. Exactly how this could be achieved remains unclear.

This study does not provide any practical advice for parents wanting to confirm or disprove a diagnosis of ASD. The researchers used specialised eye-tracking technology in an artificial environment. There may have also been many other confounding factors that could have accounted for the results.

If you are worried about your child’s behaviour or development then talk to your GP.

Where did the story come from?

The study was carried out by researchers from the Emory University School of Medicine, Atlanta, US and was funded by grants from the Simons Foundation and the National Institute of Mental Health and support from the Marcus Foundation, the Whitehead Foundation and the Georgia Research Alliance.

The study was published in the peer-reviewed journal Nature.

The BBC News reporting of the study was initially of variable quality and gave a mixed representation of the study. It usefully provided expert opinion that “autism is a very complex condition… no two people with autism are the same, and so a holistic approach to diagnosis is required that takes into account all aspects of an individual’s behaviour”. It also claimed that autism could be identified in babies as young as two months, which is not the case. However, it later clarified this point and commendably updated its story.

The BBC story also did not report the most interesting aspect of the study. The fact that, contrary to expectations, babies with ASD have unaffected eye contact ability at the two-month mark.

What kind of research was this?

This was a cohort study following infants from age two months to 24 months. It aimed to find out when the reduced eye contact that is typically seen in ASD occurs, by comparing the results of children diagnosed with ASD at 36 months to typically developing children.

What did the research involve?

The researchers recruited 59 infants who were at high risk of an ASD (they had a sibling with a diagnosis of ASD), and 51 infants who were at low risk of ASD (no first, second or third degree relative with ASD). They did this to try and make sure that their group of infants would contain some who would develop ASD.

The researchers showed the infants videos of a female actress inviting them to play and measured the amount of time the infants looked at the eyes, mouth, body and objects using eye-tracking equipment called ISCAN. They performed this test 10 times, at two, three, four, five, six, nine, 12, 15, 18 and 24 months of age.

By the time the infants were 36 months old, 13 children had been diagnosed with ASD (12 from the high-risk group and one from the low-risk group). The majority of the cases diagnosed were male. To avoid differences due to gender, the researchers only analysed boys. The researchers compared the eye-tracking results of 11 boys who had been diagnosed with ASD (10 from the high-risk group and one from the low-risk group) to 25 boys who had not (all from the low-risk group). They wanted to see when the reduced eye contact, which can be a feature of an ASD, was present before obvious symptoms of an ASD.

To prevent bias of results, the researchers administering the tests were not told which infants were at high or low risk, or whether any had already had a diagnosis of ASD, and the clinicians who diagnosed ASD were not aware of the results of the eye-tracking tests.

What were the basic results?

They found that the average amount of eye looking was the same in both groups at two months. The group that was developing typically showed increased eye contact of 3.6% per month from two to six months, while the ASD group showed reduced eye contact of 4.8% per month during this time.

The infants developing typically looked more at the eyes than at the mouth, body or objects from two to six months, but the infants with ASD showed a reduction in eye fixation from two to 24 months, which was half that of typically developing infants by 24 months.

Mouth fixation increased during the first year and peaked at 18 months in both groups. In the ASD group, eye fixation on the body reduced at less than half the rate seen in the typically developing infants and stabilised at 25% higher. Fixation on an object also reduced more slowly and increased during the second year. By 24 months it was twice the level of typically developing infants.

How did the researchers interpret the results?

In infants later diagnosed with ASD, early levels of eye looking are normal, but then levels fall. This contradicts prior hypotheses of an absence of social adaptive orientation from birth – that is babies with ASD are born with “hardwired” poor social skills.

Instead, the results showed that some social adaptive behaviours may initially be intact in newborns later diagnosed with ASD. If confirmed in larger samples, this would offer a remarkable opportunity for treatment. The developing brain has a great degree of what is known as plasticity – that is the “neural circuits” can be changed through treatment and training.

Or as the researchers put it there may well be “a neural foundation that may be built upon, offering far more positive possibilities than if that foundation were absent from the outset”.

Conclusion

This was a very small study that suggests that infants who develop ASD may not have the symptom of reduced eye contact from birth. The results should be interpreted with caution though, as it took place in a highly artificial environment. Eye contact was measured in response to a video of a woman and not a real, live person, and there may have been many other confounding factors that could have accounted for the results.

Limitations to this study include:

• very small number of participants  

• only male infant data was analysed, and although boys are three to four times more likely to develop ASD than girls, it meant that the sample size was even smaller  

• watching a video is not the same as human interaction, and eye-tracking of infants may not be entirely accurate  

We do not know the causes of ASD, but they are believed to be multifactorial, including environmental and genetic factors. A diagnosis at 24 months would be provisional and made on the basis of a number of symptoms, not just reduced eye contact. There is no evidence of the impact of earlier diagnosis, though this could improve the level of support that is provided to parents.

The researchers suggest that the eye fixation ability was normal at birth but declined by six months. While this offers hope that there may be a window of opportunity to prevent the onset of ASD, far more research is required to understand the causes of ASD and a way of preventing it.

Still, due to the fact that ASD is currently incurable, a potential window of opportunity is a very exciting prospect.

Analysis by Bazian. Edited by NHS Choices.

January 19, 2017 7:01 PM

Read more here: http://www.miamiherald.com/news/health-care/article127564169.html#storylink=cpy

By Rene Rodriguez,

The color scheme is muted — warm earth tones — and the seating is exceptionally comfortable. Elegant black-and-white prints hang on the walls: Muhammad Ali, The Jackson Five, the Scarecrow from “The Wizard of Oz.” This is not your typical doctor’s waiting room.

But what’s truly special about the Mount Sinai Adult Autism Clinic, which opened its doors on Thursday, is the service it will provide. Housed inside the Lowenstein Building at Mount Sinai Medical Center in Miami Beach is a staff of doctors, nurses and attendants trained by the University of Miami’s Center for Autism and Related Disabilities to treat autistic adults over 18.

The clinic will be a one-stop shop for patients needing a primary care doctor, specialists such as a cardiologist or neurologist, lab work and diagnostic services. Appointments will be spaced out to provide physicians extra time to consult with patients and their caretakers. The sensory-friendly waiting area provides amenities such as noise-canceling headphones, relaxation hand toys and weighted blankets to help ease anxiety. There’s even a private “quiet room” that offers closed-door solitude and silence if needed.

For people like Cole Clancy, a 27-year-old with autism, the clinic is a godsend — both for him and his family.

“As we age, we all develop health issues we didn’t have as children,” says Dina Cellini, Clancy’s mother. “Individuals with autism are no different. Many of them have other issues — psychological issues with depression or gastrointestinal issues — that don’t show themselves at an early age. Those start to evolve as you get older, so consequently you’re in need of specialists you’re not looking for when the child is 11 or 12.”

Autism spectrum disorder (ASD) is the umbrella term for a series of neurological disorders, which usually manifest between the ages of 2 and 3, that result in social interaction difficulties, verbal and nonverbal communication impairments and repetitive behavior. Depending on the severity, autism can result in anything from anxiety to intellectual and motor-skill disabilities, sleep disorders and self-injurious behavior.

According to the Centers for Disease Control and Prevention, one out of 68 American children registers on the autism spectrum — a tenfold increase since 1977. Over half a million kids with autism will reach adulthood in the U.S. over the next decade.

But while many pediatricians specialize in treating the disease, a new primary care physician is required after the patient turns 18, and most of those have no experience with autism.

Dr. Elizabeth Kury-Perez, who specializes in internal medicine and geriatrics, will lead the clinic. She has a family member who was diagnosed with autism and is well-versed in the kinds of special care her patients will need.

“We have visual cards to help conduct a physical examination and we use a visual storybook to help with the patient’s anxiety that shows them pictures of the staff and the examining room, so they know how everything and everyone will look,” she says. “They can also come by and look around even if they don’t have a visit scheduled, to help with the anxiety of going to a new doctor.”

The clinic was made possible by a donation from Igor Makarov, founder of Areti International Group, a Switzerland-based oil and energy company.

Makarov, who has an office in Jacksonville, is a former Russian bicycling champion and philanthropist with an estimated net worth of $2.1 billion, according to Forbes. Makarov became aware of autism after watching the film “The Accountant,” starring Ben Affleck as a CPA who suffers from Asperger’s Syndrome, on the high functioning end of the spectrum. Through his friendship with Eugene Frenkel, who is a member of Mount Sinai’s board of directors and executive committee, he agreed to donate the funds for the establishment of the clinic (the exact amount is protected by a donor’s confidentiality agreement).

“We’re always humbled by being able to help people, because we believe that’s our debt to society,” Makarov said in Russian on Thursday, speaking through a translator, at the dedication ceremony. “United nobody can beat us. And when we’re united, we need to continue to help each other.”

Mount Sinai President and CEO Steve Sonenreich said the clinic is the only hospital-based adult autism facility in the state.

“Identifying and answering the need for medical care in the adult autism population is one of the ways we continue to further the mission of Mount Sinai Medical Center,” he said.

Autism is much more common in today’s society than parents might think. With the numbers increasing annually, the Centers for Disease Control has stated that one out of every 68 children has been diagnosed with an autism spectrum disorder.

Times Have Changed

Back in the day, if a child was diagnosed with autism there was little to no help available. Children were left to work independently and parents were left to pay extensively for private tutoring and assistance—often without results. Organizations like ASDF were not around to provide assistance for autistic children so that they could find a way to live somewhat normal lives. In fact, just over a decade ago, autism was considered a learning disability and often children were poorly diagnosed.

Today, autism is a growing concern and is also becoming more popular in research. More parents are aware of what autism is, and there are organizations like ASDF to help educate and provide financial assistance to parents of autistic children.

Diagnosing Autism

Early detection is key in helping a child with autism live a more normal life in society. Since autism can be seen as early as 18 months of age, children should be watched throughout their development for any warning signs of autism. High-risk groups, such as children with siblings diagnosed with autism, should be watched even more closely by physicians and parents alike.

Warning signs of autism include:

• Not engaging in pretend play, not making eye contact, not liking to be held or cuddled, not understanding typical emotions or relating to their own feelings, not handling change well, and not relating to others

• Repeating actions over and over, and repeating words that are said to them 

• Having unusual reactions to everyday things

• Rarely responding to their own name

Why Early Intervention Is Imperative

Research has shown that early intervention can improve a child’s overall development. Children who receive autism-appropriate education and support at key developmental stages are more likely to gain essential social skills and react better in society. Essentially, early detection can provide an autistic child with the potential for a better life. Parents of autistic children can learn early on how to help their child improve mentally, emotionally, and physically throughout the developmental stages with assistance from specialists and organizations like ASDF.

Lastly, catching autism and working through it early also benefits parental relationships. The strain of caring for an autistic child can be an everyday challenge, but with early preparation and intervention, parents can prepare themselves for the road ahead emotionally and mentally.

SDF is helping families affected by autism by providing education, information, and financial assistance when, where, and how it is needed most. Learn more about how you can help support children on the autism spectrum by visiting www.myASDF.org or by calling 877.806.0635.

About ASDF:

ASDF is a charity that supports children with autism spectrum disorders by providing education, information, and financial assistance to their families and relevant community service organizations. Funds donated to ASDF are used to address any and all kinds of issues in assisting children with autism and their families. Visit www.myASDF.org, email

info@myASDF.org

, or call 877.806.0635 for more information and to see how you can help.

When we, as patents, bring a child into the world, we have expectations that the child will be healthy, develop normally and thrive. If this is our first child, we may not have a reliable yardstick against which to gauge whether our child’s development is progressing typically. When we have concerns, often those around us play them down, and reassure us that we are just “nervous and overly concerned parents”. 

The early signs and symptoms of autism and the associated gastrointestinal problems, tantrums and adverse behaviours vary widely. Some autistic children have only mild symptoms and impairments, while others have more gut and behavioural difficulties. However, every child with an autism spectrum disorder has problems, to some degree, in the following three key areas:

• Communicating, whether verbally or non-verbally. 

• Relating socially and interacting with others and the world around them. 

• Having repetitive or restricted behaviours. 

The word Autism comes from the greek “autos” meaning self, and children with autism are concerned with themselves. The early symptoms can be:

• A lack of responsiveness to others,
• Does not make eye contact
• Does not respond to being called, or to his or her name
• Does not make noises to attract your attention 
• Does not reciprocate smiles or imitate facial expressions
• Does not reach out when being picked up 
• Does not like to give or receive cuddles
• Doesn’t call out or make basic requests. 
• Delayed or no age-appropriate language development 
• No pointing at objects or people or waving goodbye
• Not following people by eye 

• Has repetitive behaviours such as hand flapping 

• Linines up toys instead of playing with them for their functions 

• Has an obsession with a particular video or TV program 

• Displays echolalia (repeating what you say) 

• Running close to a wall repetitively, and looking sideways at it. 

• Has self-stimulatory behaviours 

These are only common symptoms and do not include all of the behaviours that children with Autism can display, and these are not present in all children with Autism, which is why it is called an Autism ‘Spectrum Disorder’.

Early detection of autism symptoms

Early intervention

The rate at which a child develops varies greatly, and often parents and health professionals hope that the child with a developmental difference will eventually catch up. When the mothercraft nurse or the childcare centre worker, or the kindergarten teacher raises concerns and suggest that our child should be assessed by a Paediatrician, this might come as a shock. If we had some niggly suspicions, we may feel guilty for not acting sooner. Parents react differently to the news, some galvanise into action actively seek information and help, refusing to accept that it is a permanent disorder and that nothing can be done. Others withdraw in pain and are filled with guilt or even a sense of shame, and may hide the diagnosis from themselves, other family members and friends. Others just go along with the minimum intervention of one or two hours a week with a Speech Pathologist, Occupational Therapist or Psychologist.

When it comes to autism, “intensive” early intervention is vital. The sooner it is started, ideally by the age of eighteen months, the greater the chances of making deeper and faster changes. The younger the child, the greater the impact of treatment on the symptoms of autism. However, don't lose hope no matter what your child's age. Treatment can reduce the symptoms of Autism and help your child learn, grow, and thrive.

Autism and Gastrointestinal symptoms

Loose stools, diarrhea and/or constipation, bloating, flatulence, foul smelling stools, humping objects such as couches and soft toys are serious signs of intestinal disorders. The findings of a multidisciplinary panel of experts who reviewed the medical literature, with the aim of generating evidence-based recommendations was published in the journal Pediatrics in 2010. The consensus of the expert panel was that:

• Gastrointestinal disorders and associated symptoms are commonly reported in ASD. 

• Care providers should be aware that problem behaviours in patients with ASDs may be the primary or sole symptom of the underlying gastrointestinal conditions. 

The expert panel stressed that children with ASDs deserve the same thoroughness and standard of care in the diagnostic workup and treatment of gastrointestinal concerns as should occur for patients without ASDs.

Buie, T., D. B. Campbell, et al. (2010). "Evaluation, diagnosis, and treatment of gastrointestinal disorders in individuals with ASDs: a consensus report." Pediatrics 125 Suppl 1: S1-18.

Autism and tantrums

Screaming and tantrums are often seen in children with autism. However as with gastrointestinal disorders, they are not associated with the three key areas of ASD. Nonetheless, while most children have the occasional gastro and tantrums, it is the pervasive nature of the symptoms in ASD that should be of concern. These behaviours are related to nutrient deficiencies and food sensitivities and reactions to toxic food colourings, additives and preservatives which the body may not be able to detox due to mutated or missing detox genes (which we routinely check for at the clinic). Often these are also related to gastrointestinal problems

Regressive Autism

Note that the earliest signs of autism does not involve abnormal behaviours, but rather the absence of normal behaviours, sometimes leading parents to feel that they have a remarkably good baby as the infant may seem quiet and not demanding. Parental reports suggest that most children with autism spectrum disorders start to develop communication skills, respond well socially and play appropriately and then regress, usually between the ages of 12 and 24 months. They can become socially and emotionally isolated, and lose most if not all language. Such regression should be a warning  and treated as a possible sign of regressive autism.  The regressive nature of the disorder in most children suggests that a mechanism is at play which causes damage and dysfunction to the developing brain. If an early diagnosis is made and intensive treatment started promptly, there is a better chance that the damage underlying the behavioural regression may be stopped, and there is a better chance of recovery.

Presently, we don’t have a medical test that can diagnose autism. Instead, specially trained physicians and psychologists administer autism-specific behavioral evaluations.

Often parents are the first to notice that their child is showing unusual behaviors such as failing to make eye contact, not responding to his or her name or playing with toys in unusual, repetitive ways. For a description of early indicators of autism, see Learn the Signs.

The Modified Checklist of Autism in Toddlers (M-CHAT) is a list of informative questions about your child. The answers can indicate whether he or she should be further evaluated by a specialist such as a developmental pediatrician, neurologist, psychiatrist or psychologist.

We encourage parents to trust their instincts and find a doctor who will listen and refer their child to appropriate specialists for diagnosis. Unfortunately, doctors unfamiliar with diagnosing autism sometimes dismiss parent concerns, delaying diagnosis and the opportunity for early intervention therapies. Autism Speaks and other autism organizations are working hard to raise awareness of early signs among physicians as well as parents.

From birth to at least 36 months of age, every child should be screened for developmental milestones during routine well visits. When such a screening—or a parent—raises concerns about a child's development, the doctor should refer the child to a specialist in developmental evaluation and early intervention. These evaluations should include hearing and lead exposure tests as well as an autism-specific screening tool such as the M-CHAT. Among these screening tools are several geared to older children and/or specific autism spectrum disorders.

A typical diagnostic evaluation involves a multi-disciplinary team of doctors including a pediatrician, psychologist, speech and language pathologist and occupational therapist. Genetic testing may likewise be recommended, as well as screening for related medical issues such as sleep difficulties. This type of comprehensive helps parents understand as much as possible about their child's strengths and needs. (For local and regional centers specializing in the coordinated medical care of children and adolescents with autism, explore our Autism Treatment Network and visit our Resources page)

Sometimes an autism spectrum disorder is diagnosed later in life, often in relation to learning, social or emotional difficulties. As with young children, diagnosis of adolescents and adults involves personal observation and interview by a trained specialist. Often, a diagnosis brings relief to those who have long struggled with difficulties in relating socially while not understanding the source of their difficulties. A diagnosis can also open access to therapies and assistive technologies that can improve function in areas of difficulty and, so, improve overall quality of life. (Learn more about Adult Services here.)

DSM-5 (DSM-V) 

Autism Speaks is pleased to provide the full-text of the diagnostic criteria for autism spectrum disorder (ASD) and the related diagnosis of social communication disorder (SCD), as they appear in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), adopted in 2013. Psychologists and psychiatrists use these criteria when evaluating individuals for these developmental disorders..

Autistic defendants and prisoners are suffering at the hands of an out-of-date criminal justice system

Prison is not an easy ride – not least for those with autism spectrum disorder (ASD). We know from experience that some prisoners are more vulnerable to bullying and victimisation, more likely to be easily led and manipulated, and more vulnerable to sexual and physical abuse. They will likely have difficulty understanding and responding to other inmates’ facial expressions and body language – causing numerous problems such as understanding their place within the prisoner hierarchy.

But it is more than the immediate danger that is an issue. Prisons are noisy environments with banging doors, and other inmates talking and shouting. The enclosed nature and prisons’ structural design means these sounds reverberate and are amplified. Many with autism experience sensory hypersensitivity: rain on the window may sound like gun fire, and fingers on the scalp when washing hair may feel like razor blades. For them, the every day noise of a prison can be deafening.

Social communication difficulties can also be an issue, such as understanding the non-literal language of other inmates. For instance, an inmate saying to another that he was “going to rip his head off!” would cause an individual with autism to be surprised that this action had not actually been carried out.

Those with autism can also exhibit a rather rigid adherence to certain prison regimes. Some are obsessive about the cleaning and organising routines they follow in their cell. If a guard were to conduct an unannounced room search, for example, and move everything around, it could cause a lot of distress.

A significant percentage

As of December 2016, the UK prison population stood at 84,069. Let’s say that 1 per cent of prisoners have ASDs – the same prevalence as in the general population – then there are at least 840 prisoners who are on the spectrum.

However, there are a number of studies which suggest that the prevalence of ASD is actually higher in the prison population than the general population, and that it is actually under-diagnosed in prisoners. Yet there is just one institution in the UK – Feltham, for young offenders – which has been awarded Autism accreditation and is therefore deemed to be “autism friendly”.

The aim of accreditation is to improve autism practice across all areas of prison life, with the long-term aim of tackling issues frequently experienced by prisoners with ASD, and ultimately reducing the risk of reoffending in this subgroup.