High functioning autism disorder
High Functioning Autism and Asperger's: Technical Smarts
Experts explain why some people with autism are good fits for technically demanding jobs.
Written by Martin Downs, MPH
- Diagnosing Autism
- Asperger's Syndrome
- Brain Wiring
- Spike in Autism Cases
- Jobs and Autism
The Internet can be a social paradise for high-functioning autistic people and people with Asperger's syndrome. Here, the nonverbal niceties of social interaction that they find so perplexing don't apply. People who might strike others as gauche in person often fit in perfectly well on Internet message boards.
A Web link to an autism screening test posted recently on Digg.com, a tech news site, generated hundreds of comments from users. Many self-described computer geeks took the online test, for which a score of 16 is considered average, and a score of 32 or higher suggests autism.
"Twenty. Not autistic, just plain geek," one user commented.
"Thirty-eight, definitely 38. Time for Judge Wapner," wrote another, a reference to a TV show watched obsessively by an autistic character in the movie The Rain Man.
Diagnosing Autism
Of course, you can't diagnose anything by taking a quiz on the Internet. "It is only a screening instrument. It is not a substitute for a full diagnostic assessment," says the test's author, Simon Baron-Cohen, PhD, a psychology professor and director of the Autism Research Centre at the University of Cambridge, England.
"In addition, the [test] tells you if you have lots of traits but it does not tell you if these traits are causing problems. A diagnosis is only given if the person is suffering in some way," he tells WebMD.
But if nothing else, the lively discussion thread on Digg.com, and similar activity at other online techie hangouts like Slashdot, illustrates that many of them are inclined to identify with autism.
"It's been said that people with autism invented the Internet," Eric Hollander, MD, director of the Seaver and New York Autism Center of Excellence at the Mount Sinai School of Medicine, tells WebMD. "By email you don't have to read people's nonverbal social cues. You don't have to look at body language or facial expressions. It's just the verbal content of communication."
Not only does the Internet downplay autistic social deficits, but the language of computers also allows some people with autism to give full expression to their exceptional abilities.
Asperger's Syndrome
Autism is a developmental brain disorder that includes many different symptoms, with a broad range of severity. People with the disorder are said to fall somewhere along the "autism spectrum." Some are severely disabled, but others may only exhibit mild symptoms. IQ levels can also vary significantly.
Those with normal and above-average intelligence are said to have high-functioning autism. Asperger's syndrome is closely related. Identified for the first time in 1944 by Viennese psychologist Hans Asperger, it wasn't officially classified as a unique disorder until 1994. It shares all the features of high-functioning autism except that people with Asperger's don't have early delays in developing language.
Baron-Cohen studies the relationship between technical smarts and autistic tendencies, and he has developed a new theory about it.
Brain Wiring
The three hallmarks of autism are difficulty communicating, problems with social development, and obsessive, narrow interests. These obsessions are often extremely technical. Baron-Cohen explains it in terms of "empathizing" vs. "systemizing." People on the autism spectrum are limited in their ability to comprehend, or care about, the emotions and motives of other people. But they are intensely interested in how certain things work. Their brains, he says, are wired to "systemize," or to pick out patterns in information and to discern the logical rules that govern systems.
That means people with Asperger's and high-functioning autism often have great talents for creating and analyzing mechanical systems, such as engines, or abstract systems, like mathematics and computer programs. Baron-Cohen recently surveyed undergrads at Cambridge and found significantly more math majors diagnosed with autism compared with students majoring in other disciplines, such as medicine, law, and social science. These are all brainy subjects, but mathematics is best suited to a systemizing mind.
Baron-Cohen's research also found that Cambridge students pursuing math, physics, and engineering were more likely to have autistic family members compared with students of literature.
Spike in Autism Cases
Autism used to be considered a rare disorder, but current estimates place the number of children with autism spectrum disorders somewhere between one in 500 and one in 166. There has been a spike in autism rates over the past two decades, but the cause is unknown and very controversial. Baron-Cohen is now investigating whether what he terms "assortative mating" may play some role in it.
He proposes that people who may carry genes for autism can have strong systemizing traits, which leads them to pursue careers in science and technology, where they meet like-minded mates and have children who turn out to be autistic. To test this idea, he is studying places like California. The California state health department reported in 2003 that autism cases doubled between 1998 and 2002, which coincides with the Internet technology boom.
Jobs and Autism
No one has yet taken a head count of people with high-functioning autism or Asperger's among the ranks of engineers, physicists, and computer programmers. Popular belief holds that places like NASA and Silicon Valley are havens for them.
To Nancy Minshew, MD, professor of psychiatry and neurology at the University of Pittsburgh School of Medicine, that's beside the point. Far too many, she says, are not employed at all. Only about one-third have jobs, and many of them are underemployed.
One of the best-known Asperger's success stories is that of Temple Grandin, who carved out a unique career designing systems for managing livestock and who has written books about her experience. "If she had to go through human resources, she'd be a failure," Minshew tells WebMD. "For some reason, we think that they have to pass socially-based interviews in order to do a technological job. Most of the people with Asperger's and autism are going to fail and never get a job. "
Minshew says there are countless jobs -- not just in technology -- that people with autism could do better than anyone else. "A man in construction said, 'I need a tile layer that will lay tile straight,' and I said, 'I'll give you somebody that'll give you a new definition of straight.'"
Symptoms, Tests, Diagnosis, and Treatment
Written by WebMD Editorial Contributors
- Symptoms
- How You Get a Diagnosis
- Treatment
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When you meet someone who has Asperger's syndrome, you might notice two things right off. They're just as smart as other folks, but they have more trouble with social skills. They also tend to have an obsessive focus on one topic or perform the same behaviors again and again.
Doctors used to think of Asperger's as a separate condition. But in 2013, the newest edition of the standard book that mental health experts use, called The Diagnostic and Statistical Manual of Mental Disorders (DSM-5), changed how it's classified.
Today, Asperger's syndrome is technically no longer a diagnosis on its own. It is now part of a broader category called autism spectrum disorder (ASD). This group of related disorders shares some symptoms. Even so, lots of people still use the term Asperger's.
The condition is what doctors call a "high-functioning" type of ASD. This means the symptoms are less severe than other kinds of autism spectrum disorders.
The DSM-5 also includes a new diagnosis, called social pragmatic communication disorder, which has some symptoms that overlap with Asperger's. Doctors use it to describe people who have trouble talking and writing, but have normal intelligence.
Symptoms
They start early in life. If you're a mom or dad of a kid who has it, you may notice that they can't make eye contact. You may also find that your child seems awkward in social situations and doesn't know what to say or how to respond when someone talks to them.
They may miss social cues that are obvious to other folks, like body language or the expressions on people's faces. For instance, they may not realize that when somebody crosses their arms and scowls, they're angry.
Another sign is that your child may show few emotions. They may not smile when they're happy or laugh at a joke. Or they may speak in a flat, robotic kind of way.
If your child has the condition, they may talk about themselves most of the time and zero in with a lot of intensity on a single subject, like rocks or football stats. And they might repeat themselves a lot, especially on a topic that they're interested in. They might also do the same movements over and over.
They also may dislike change. For instance, they may eat the same food for breakfast every day or have trouble moving from one class to another during the school day.
How You Get a Diagnosis
If you notice signs in your child, see your pediatrician. They can refer you to a mental health expert who specializes in ASDs, like one of these:
Psychologist. They diagnose and treat problems with emotions and behavior.
Pediatric neurologist. They treat conditions of the brain.
Developmental pediatrician. They specialize in speech and language issues and other developmental problems.
Psychiatrist. They have expertise in mental health conditions and can prescribe medicine to treat them.
The condition is often treated with a team approach. That means you might see more than one doctor for your child's care.
The doctor will ask questions about your child's behavior, including:
- What symptoms do they have, and when did you first notice them?
- When did your child first learn to speak, and how do they communicate?
- Are they focused on any subjects or activities?
- Do they have friends, and how do they interact with others?
Then they'll observe your child in different situations to see firsthand how they communicate and behave.
Treatment
Every child is different, so there isn't a one-size-fits-all approach. Your doctor might need to try a few therapies to find one that works.
Treatments can include:
Social skills training. In groups or one-on-one sessions, therapists teach your child how to interact with others and express themselves in more appropriate ways. Social skills are often best learned by modeling after typical behavior.
Speech-language therapy. This helps improve your kid's communication skills. For example, they'll learn how to use a normal up-and-down pattern when they speak rather than a flat tone. They'll also get lessons on how to keep up a two-way conversation and understand social cues like hand gestures and eye contact.
Cognitive behavioral therapy (CBT). It helps your child change their way of thinking, so they can better control their emotions and repetitive behaviors. They'll be able to get a handle on things like outbursts, meltdowns, and obsessions.
Parent education and training. You'll learn many of the same techniques your child is taught so you can work on social skills with them at home. Some families also see a counselor to help them deal with the challenges of living with someone with Asperger's.
Applied behavior analysis. It's a technique that encourages positive social and communication skills in your child -- and discourages behavior you'd rather not see. The therapist will use praise or other "positive reinforcement" to get results.
Medicine. There aren't any drugs approved by the FDA that specifically treat Asperger's or autism spectrum disorders. Some medications, though, can help with related symptoms like depression and anxiety. Your doctor may prescribe some of these:
- Selective serotonin reuptake inhibitors (SSRIs)
- Antipsychotic drugs
- Stimulant medicines
With the right treatment, your child can learn to control some of the social and communication challenges they face. They can do well in school and go on to succeed in life.
Why is it so hard to live with "high functioning" autism?
5/27/15
ASD expert on the myths and challenges of high functioning autism
Author: Lisa Jo Rudy
Source:
The spectrum of autism is very wide. If you think of it as a rainbow (or bell curve), you will notice that a significant proportion of the people on the spectrum do not belong to one side or the other - they are somewhere in the middle. Of course, at this point in history we don't have evidence that MOST people on the autism spectrum are "somewhere in between," but it's clear that the media tends to focus on only the two extremes of autism - the most severely disabled and the most highly functioning people.
If you look at autism through the eyes of journalists, high-functioning autism is a bunch of eccentric geniuses. Often mentioned are Bill Gates, Albert Einstein, as well as actors Dan Ackroyd and Daryl Hannah. In other words, we are talking about people who simply stand out from the background of others. However, in real life, the concept of "high-functioning autistic" rarely coexists with such epithets as "genius", "business tycoon" and "Hollywood star".
In fact, people with high-functioning autism may be no more intelligent than their typical peers. And they may completely lack the motivation to achieve public recognition, which at one time forced Bill Gates to look for investors, and Einstein to publish an article.
They may also experience significant difficulties in daily activities, employment or personal life, and this often leads to low self-esteem. These problems are greatly exacerbated by the fact that others constantly react to them with bewilderment or indignation. The reason is that in many situations people with high-functioning autism "pass for normal" and are not expected to behave or respond in an unusual way.
Also, people with more severe autism are not usually required to "just pull themselves together and act normal" in difficult situations for them, but people on the higher end of the spectrum are often expected to do just that.
Finally, people with high-functioning autism tend to be very aware of their own difficulties and may be very distressed by the negative reactions of others.
Here are just a few common problems people with high functioning autism (including those diagnosed with Asperger's syndrome) often get in the way of their success and happiness:
Severe sensory impairment. People with high functioning autism, like everyone on this spectrum, are susceptible to sensory processing disorders. This can include mild to severe hypersensitivity to noise, crowds, bright lights, certain tastes, strong smells, and touch. In practice, this means that even a very gifted and eloquent person may be completely unable to enter a crowded restaurant, go to a movie, or endure going to a supermarket, a stadium, or other public places.
Social blindness. What is the difference between a polite greeting and a light flirt? How do you know if you're talking too loudly? When is it okay to talk about personal problems or interests, and when is it best to refrain from doing so? When is it important to stop doing what you enjoy and focus on the needs of the other person? Most people have trouble answering these questions, but if you have high-functioning autism, they can become insurmountable barriers to communication, employment, and romance.
Anxiety and depression. Anxiety disorders, depression, and other emotional disturbances are much more common in people with high-functioning autism than in the general population. We don't know if autism leads to these disorders, or if it's just a natural consequence of frequent failure and social rejection. But whatever the cause, emotional disturbances can be disabling in and of themselves.
Lack of skills in planning one's actions. The skills we use to organize and plan our lives are called executive functions. They allow NT adults to plan ahead for their daily routine, notice when they run out of shampoo and buy more on the way home, or plan work on a complex long-term project. Most people with high-functioning autism have very severe executive dysfunction. As a result, it is extremely difficult for them to cope with household chores, the slightest change in their usual routine can be a disaster for them, and so on.
Problems of emotional regulation. Contrary to popular belief, people with autism do not suffer from lack of emotion. Moreover, people with autism can become overly emotional in inappropriate situations. Imagine a teenager crying over a change in plans, or a grown woman having a tantrum because her car wouldn't start. These are examples of typical problems for people with high functioning autism that can be very successful, but ONLY in predictable situations without unexpected obstacles.
Problems with changes and transitions. Many neurotypicals find it difficult to adapt to change, but for people with high-functioning autism, this is a problem on a completely different level. Once a familiar and comfortable routine has been established, people with autism generally want to keep that routine forever. An autistic adult can go out with friends every Wednesday for nachos without any problems, but the idea of going out on Thursdays for chicken wings instead can cause a panic attack and even anger.
Difficulties with oral speech perception. A person with high-functioning autism may be ready to do a task given to him brilliantly, but if the instructions were given to him orally, then there is a risk that he simply will not be able to follow them. For example, if a police officer says "stay in the car and hand me your papers," a person with autism might only make out "stay in the car" or only "hand over the papers." The same may apply to instruction in the classroom, in the doctor's office, or in the workplace. As you might guess, this often leads to all sorts of difficulties, ranging from problems with the police to unintentional mistakes at work.
As you can see, the term "highly functional" means just that. However, this does not mean that high-functioning autism is an “easy” diagnosis. It is important for loved ones, employers, teachers, or others who interact with people on the high end of the autism spectrum to remember that autism is autism.
We hope that the information on our website will be useful or interesting for you. You can support people with autism in Russia and contribute to the work of the Foundation by clicking on the "Help" button.
Autism in adults, Research
Autism in adults: symptoms, causes, treatment
- What is autism spectrum disorder
- Symptoms of ASD in adults
- Causes of ASD
- ASD Help
- How people with autism spectrum disorder live
- ASD in adults in Russia
The material was commented by Elena Grigorenko, clinical psychologist, molecular geneticist, Ph.D. Research MSUPU, Head of the Scientific and Expert Council of the Vykhod Foundation
What is Autism Spectrum Disorder (ASD)
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ASD is not a disease, but a developmental disorder. The main difference is that the disease has a beginning, a period of flow and an end. ASD is not contagious, autism cannot be "sick" - a person has it from birth.
Diagnostics of autism spectrum disorders in Russia and other countries of the world is carried out according to the International Classification of Diseases, 10th revision (ICD-10). The United States has its own classification - the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). It differs slightly from the ICD-10, but with the introduction of the ICD-11, the discrepancies will be eliminated. The transition to the new classifier is planned for January 2022. It will no longer have Asperger's and Kanner's syndromes as separate diagnoses, they will be combined into the definition of "autism spectrum disorder". In the latest edition of the American DSM-5 manual, the category of Asperger's syndrome is also missing [1].
Some doctors believe that there is no need to distinguish between Asperger's syndrome and autism. Tony Atwood, ASD specialist: “Research shows no clear difference between the two diagnoses. There are fewer differences than similarities. Today, both terms may well be interchangeable” [2]. According to Patricia Howlin, clinical psychologist, emeritus professor at the Institute of Psychiatry at King's College London, a member of the British Psychological Society and the Exit Foundation's scientific advisory board, the name "Asperger's syndrome" has long been used very loosely. There was no consistency in mentioning this diagnosis. In addition, in the US, children with Asperger's syndrome did not receive enough care compared to those who were diagnosed with autism. It was believed that they needed it less.
Despite the fact that according to the new classifications of diseases, Asperger's syndrome is not distinguished as an independent diagnosis, some specialists continue to use it in communication. The main difference from "normal" autism is that speech and cognitive abilities are preserved. The name of the diagnosis was given by the English psychiatrist Lorna Wing in honor of the Austrian physician Hans Asperger, who worked with children with a lack of ability for non-verbal communication. There are ongoing discussions that the term itself is unethical due to Asperger's collaboration with the fascist regime.
© Shutterstock
According to the US Centers for Disease Control 2020, ASD affects one in 54 children [3]. WHO statistics claim that every 160th child [4]. Psychiatrist and epidemiologist Eric Fombon says: “This data is from my old 2012 paper that I worked on with Mayada Elsabag. Now they are outdated. In 2021, autism occurs in one in 100 people” [5].
ASD is a range of mental disorders that cause difficulties with social interaction. Most often, the disorder is spoken of in children, because possible disorders appear at an early age. But it also happens that the symptoms are mild, and as a result of misdiagnosis, people can struggle with other diseases for years without realizing that they have ASD.
Symptoms of ASD in adults
There are currently no hormonal, biochemical or genetic markers to define ASD. Brain scans don't help either — structural changes don't indicate the severity of symptoms or their specific manifestation. Doctors focus on the behavior of patients. Scientists talk about a spectrum of disorders because they vary based on symptom presentation, age, and other health factors. Therefore, each case must be considered separately. Social and communication skills, the severity of mannerisms - unconscious gestures, features of speech and facial expressions, as well as stereotypical behavior are taken into account.
Why is the word spectrum used? The manifestations of the disorder are very diverse. For example, autism can be diagnosed in intellectually and creatively gifted people who demonstrate outstanding achievement in the arts or sciences, or it can be found in patients with brain disorders. The diagnosis occurs in those who avoid society or are basically unable to join it, as well as in those who are constantly looking for interaction, but at the same time cannot communicate according to accepted standards. Some people with autism are fluent in oral communication, while others are only able to communicate using alternative means of communication, such as cards or special applications for gadgets. And there are many such examples of the diversity of manifestations in the autism spectrum.
It is not possible to self-diagnose to define ASD because it is a complex disorder that requires a high level of specialist skill to define. A person can look at the list of symptoms and find some of them in himself, but this is just a way to suspect deviations. Differential diagnosis is the task of the psychiatrist alone. If you assume that the person you are interacting with for the first time has ASD, remember that every individual is valuable and worthy of respect, regardless of diagnosis. The symptoms can be very different, and no people experience the disorder in the same way. Often it is combined with other diagnoses - in almost 3/4 of cases, concomitant disorders were found; each of them must be considered separately.
There are several indicators, the so-called red flags, that can tell you to seek medical advice.
Emotional and behavioral symptoms
This includes repetitive behavior as well as inability to empathize. Some people with ASD have difficulty trying to interpret social and sensory issues. Autism Spectrum Disorder is often expressed in an increased emotional response to disappointments or changes in familiar situations. In addition, doctors point to an abnormal response to sensory stimuli, such as touch, smell, lack of light: this may be hypersensitivity or, conversely, a lack of response.
Communication symptoms
Patients with ASD may experience difficulties in social interaction, doctors often diagnose speech problems - it can be harsh, like a robot. Some people with autism spectrum disorder find it difficult to moderate their voice, such as lowering it when circumstances warrant it. One of the symptoms is repetitive speech, which is built around the same phrases. At the same time, an increase in vocabulary often occurs in those areas of knowledge that interest a person. Hyperfocus on one topic is also expressed in the desire to constantly talk about it with other people.
Adults with ASD may not pick up cues from others, such as hand gestures, facial expressions, or body language. Some patients try to avoid eye contact or do not feel the need for it. A person with ASD is not necessarily a closed introvert, he can be quite sociable. From the point of view of the development of communication skills, people with high-functioning autism are distinguished, they have well-developed verbal intelligence, but other diagnostic categories of ASD are found.
Yulia Azarova, editor-in-chief of media resources of the Vykhod Foundation
“There is a hypothesis that people with ASD may have problems with the ability to put themselves in the place of another. But at the same time, some research suggests that people with autism are doing great with empathy, which seems to involve the ability to put oneself in the place of another, and the problem is teaching them to understand when to “turn it on.”
Difficulties with coordination
Clumsiness in itself is not considered a sign of illness, but coordination problems are common in adults with ASD. This makes it difficult to perform simple everyday tasks - from walking to tying shoelaces.
“ASD now has three categories of signs (there will be two of them with the eleventh revision of the ICD): social and communicative deficits and repetitive behavior,” explains Yulia Azarova. “Clumsiness, hypersensitivity, etc., are not medical symptoms of ASD. They may or may not be present. Therefore, these behavioral features belong to the so-called autism red flags, based on which one can notice the atypical development of the child. But in no case should you independently diagnose your child with autism on the basis of, for example, hypersensitivity. The appearance of red flags is a reason to seek professional diagnostics.”
Some of the characteristics of autism spectrum disorder can be seen as positive. So, a person with ASD has a rare concentration of attention, can focus on solving a problem, scrupulously engage in one thing for a long time; he is very attentive to details. But the presence of some special abilities does not negate the fact that autism is a serious diagnosis that has a great impact on the life of a person and his loved ones. Therefore, it would be a mistake to think of autism as a cute feature or a charming oddity.
If you or your loved ones experience these symptoms, you should consult your doctor. “Only a psychiatrist has the right to diagnose autism in Russia. A psychologist, pediatrician, neurologist or other doctor who observes a child can only suspect that he has this disorder and refer him for further consultation with a psychiatrist,” says Yulia Azarova.
When examining a patient, clinicians consider criteria for social behavior, interpersonal skills, and physical problems that may be indicative of other illnesses. It is not uncommon for people with ASD to be anxious, show signs of depression or, conversely, hyperactivity, so the diagnosis can be mistaken for one of these conditions.
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Causes of ASD
The exact cause of ASD is unknown, but it is believed that 80–90% of cases are due to a genetic predisposition [6]. More than 100 genes have already been found that scientists have linked to the onset of autism. But there are also environmental factors that can also contribute to the formation of this disorder in a child. For example, inflammation in the mother's body during pregnancy has been linked to an increased risk of ASD in the baby. It can occur due to chronic diseases such as arthritis, lupus or diabetes, or be triggered by obesity due to cytokines that cross the blood-brain barrier and attack neural networks.
There is not enough reliable information about medications taken during pregnancy. But there is evidence that some drugs have this side effect. For example, valproic acid, which is used to treat epilepsy and bipolar disorder, increases the risk of having a child with autism by 2–2.5 times [7].
© Hunter Johnson/Unsplash
Another avenue of research is the environment in which the baby was born, such as preterm birth or too low birth weight (less than 2 kg). In any case, if a child has had a difficult start in life, often on follow-up he may have problems with social communication, and in some cases, autism.
Help for adults with ASD
“Too often we try to treat ASD with pills. It's impossible. Medications may be given to people with autism to deal with other problems that they have just like everyone else. For example, depression or anxiety. But there is no drug therapy for ASD,” explains Yulia Azarova.
However, there are ways to help children and adults cope with the symptoms of autism and the difficulties that come with it. According to the clinical guidelines for ASD, approved by the Ministry of Health on July 17, 2020, integrated programs for helping people with autism use applied behavior analysis, rewards and information gathering. These are the symptoms of autism. To help people with ASD, methods that show themselves to be ineffective for correcting autism symptoms, as well as potentially dangerous (for example, holding therapy) are not recommended [8].
“The meditation and mindfulness offered by some doctors is not a therapy for autism. Such methods do not have a high level of evidence. We can just as well talk about pet therapy: yes, some children like to spend time with animals and then they feel good. But will it be a therapy for ASD symptoms? No. It’s the same here: meditation and mindfulness are good, but they don’t help fight the symptoms of autism,” says Yulia Azarova.
Some people who were diagnosed with ASD as children outgrow it, achieving an "optimum outcome". The term was coined by Deborah Fine, professor of psychology at the University of Connecticut at Storrs. In 2013, she conducted research on 34 people diagnosed with autism. In 2016, scientists reviewed cases of optimal ASD outcomes and concluded that it is possible to talk about the loss of a diagnosis only if it is made early. Timely intensive behavioral intervention plays an equally important role. The majority of people with autism retain symptoms consistent with the diagnosis and require lifelong therapy and support [9].].
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How people with autism spectrum disorder live
Patients can lead full, healthy and productive lives. Due to their high attention to detail and the ability to focus, they can achieve success in their careers. A prime example is environmental activist Greta Thunberg. Fictional characters include Shaun Murphy from The Good Doctor, Saga Noren from The Bridge, or Sheldon Cooper from The Big Bang Theory. At the same time, the creators of the latest series claim that Cooper, who is distinguished by obvious obsessive behavior, social dysfunction, regressive tendencies and an inability to perceive sarcasm, does not have an ASD diagnosis. The writers refuse to pathologize the characters to be accepted without labels.
Lydia Netzer, the mother of a teenager with an autism spectrum disorder, believes that the right decision is not to create the image of a “cute autism” with an official diagnosis [10]. Because otherwise, ASD is perceived as a kind of funny feature: a person with an autism spectrum disorder does not understand hints, is picky in habits, remembers and gives out original facts, instantly solves complex mathematical problems. This creates the unrealistic stereotype that people with ASD are quirky but always socially successful. In fact, everything is more complicated, and a person can experience serious difficulties, getting into conflict situations with others. "Cute" disorders are deceptive and can lead to the misconception that tolerance is easy.
In addition to therapy and professional help, a person with autism spectrum disorder has to devote a lot of attention to self-advocacy - to defend their views, make decisions, cope with difficulties and express personal opinions in an acceptable way. People with serious diagnoses find it difficult to seek help because they often face a backlash. It is important to find something that brings joy, captivates and works well, rely on a sense of self-worth.
Maverick Crawford, a student and social activist with ASD, suggests praising yourself for small achievements, writing a “support list” indicating things that please and motivate [11]. He recommends self-esteem-building practices and talks about the importance of finding like-minded people and helping others with the same disorder. Crawford admits that he has speech problems - he often stutters, which can annoy interlocutors. Crawford encourages people with ASD to try to remain calm and take a deep breath before starting a monologue, speak confidently, slowly, concisely and to the point, be persistent and not give up.
“It would be nice if we had enough people with autism who would be so adapted that they could protect their rights,” says Yulia Azarova. - But in Russia such a catastrophic underdiagnosis that basically the diagnoses are received by already very serious patients-children, whose symptoms are conspicuous. And parents have to defend their rights.”
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Large companies organize employment programs for people with autism spectrum disorder. But they require constant investment. For example, in the United States, out of 100 thousand people with ASD at the age of 25, only 58% have a well-paid stable job. For comparison: among graduates without a diagnosis of ASD who graduated from high school, this figure reaches 99%.
ASD in adults in Russia
The Ministry of Health of the Russian Federation confirms that the prevalence of ASD in the Russian Federation is in line with the global average of 1%. There are still no scientific works that would confirm this information, and the number of official diagnoses is only 10% of the predicted number. This significantly complicates the creation of a system of state support for children with autism: the authorities have no real understanding of how many people need to create supporting services. The first research is now being carried out at St. Petersburg State University.
The study is led by Prof. Elena Grigorenko, Head of the Exit Foundation Advisory Board, in collaboration with Maureen Durkin, PhD in Epidemiology and Professor of Public Health and Pediatrics at the University of Wisconsin, USA. It is possible that the factors for the development of ASD will be different depending on the population due to the influence of the environment and genetic characteristics.
Equally important is the availability of diagnostic and therapeutic services. Oksana Talantseva, clinical psychologist, PhD student at the Faculty of Psychology at St. Petersburg State University, member of the working group of the draft clinical guidelines for ASD, says: “This is a new study, and our task is to make it as representative and objective as possible so that the data can be interpreted so that our methods can be applied to others. samples. Our study will tell what and how is the situation with autism in one district of St. Petersburg. But we want it to be scaled up later, so that we can talk about other regions, about the country as a whole” [12].
Elena Grigorenko, Clinical Psychologist, Molecular Geneticist, Doctor of Psychology, Professor at Yale University, University of Houston, Professor at the Department of Molecular and Human Genetics and Pediatrics, Baylor College of Medicine, Researcher at Haskins Laboratories Inc., Leading Researcher at the Center for Applied Psychological and Educational Research, Moscow State University of Psychology and Education , Head of the Scientific and Expert Council of the Vykhod Foundation
“In Russia, ideas about autism generally lag behind the world by about 30 years. And it will take us a long time to overcome this gap, because we need money for scientific research, which no one has ever done in our country. At least to the extent that they are carried out, for example, in the United States. Prospects depend on how seriously people who make decisions in governing the country will approve this scientific and practical direction. Today there are already grounds for restrained optimism, but time will tell.”
Research in Russia is necessary to assess the scale of the problem, to competently approach the issue of creating a diagnostic system, supporting people with autism and informing the population. Publishing data is an effective tool to improve the situation. Researchers identify several priority state strategies for ASD. First of all, it is worth paying attention to sufficient funding for research and the development of a support system, in which specialists will work according to evidence-based methods.
A separate issue is the employment of people with autism spectrum disorders. Some companies participate in charitable projects and provide applicants with the opportunity to work in positions that suit them. Thus, the MVS Group, which implements the largest concession in Russia in the field of road safety, has launched a project for the inclusive recruitment of people with ASD.
Anna Shapiro, HR Director, MVS Group
What positions have people with ASD been hired at MVS Group? Why was such a decision made?
We want to make our country safer, more comfortable for everyone. The main objective of the project is to enable adults with autism to successfully build a career and socialize in society, which means they can live a normal life, provide for themselves, have friends, hobbies, and a family.
There are many tasks in the IT sector, including our company, that people with autism can perform very well. The mental and psychological qualities of some of them make it possible to effectively solve problems with a constant high load: for example, processing a large amount of data, when such factors as routine, repetition, and the need to keep the focus of attention for a long time come to the fore.
We currently have eight people with autism in our team. All of them have been trained and are actively involved in the work processes. Employees with ASD work in the information preprocessing department.
What difficulties do people with ASD face during interviews? How did the interviews for your program differ from the standard ones?
The standard interview form (as for neurotypical people) is not suitable for applicants with ASD. Such candidates do not always understand specific questions, metaphors, double entenders, and questions in general about experience. With the help of experts, we have developed a sequence of selection stages and a special interview that helps to assess the characteristics, skills and abilities of a potential employee. Communication is built in several stages:
- telephone interview with the candidate and his guardian, obtaining their prior consent;
- conversation with a parent (guardian) and the candidate himself, passing specialized tests;
- brief meeting with head of department and HR to identify the most relevant candidates;
- meeting with the head of the department and a mentor in the office, explaining the algorithm of work, trial tasks for the employee, checking how he assimilates information and his condition during the working day;
- making a decision on employment, work schedule of an employee with autism, on the necessary specific support for him at the workplace;
- registration of relations with an employee.
Did you have to somehow adapt the standard job descriptions for people with ASD?
The people with ASD who work for us are different. Therefore, for each of them it is required to adapt work tasks and convey information in their own way. The most important thing to do when hiring people is to divide big tasks into small and simple ones. The duties of employees with autism should be clearly understood by them, everything should be clearly described, a clear algorithm of actions is needed. Thus, they learn much faster and perform their tasks more efficiently. At MVS Group, mentors work with interns, whom we have attracted to cooperate with the help of our project partner, DistingTec, a company engaged in employment of people with ASD in the IT field. Professional tutors not only physically and psychologically support their wards, but also teach neurotypical employees and the head of the department how to behave and how to correctly formulate their instructions and requests.