Can autism show up later in life

When Autism is Diagnosed in Adulthood

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When Autism is Diagnosed in Adulthood

January 27, 2020

By: Sherri Alms

Categories: Community News

When it comes to diagnosing autism, much discussion and emphasis are placed on early diagnosis. Nonetheless, for a variety of reasons, a number of people discover they are on the autism spectrum much later in life. For many of them, the diagnosis helped put events in the past in clearer context. Autism self-advocate Michael John Carley, who was diagnosed at 36, said, “my diagnosis explained as lifetime of puzzles.”  New research is illuminating his point.

A study published in November in Health Psychology & Behavioral Medicine found that even a late diagnosis of autism spectrum disorder (ASD) – after age 50 – provides considerable benefits. As noted in the study abstract, receiving a diagnosis was “seen as a positive step and allowed for a reconfiguration of self and an appreciation of individual needs.

Scientists at the University of Cambridge interviewed nine people (five women and four men) who described their experiences before and after receiving their diagnoses. Most of the participants knew they were different from a young age, despite not having a diagnosis, according to an article on the ADDitude website about the study. All of them had autism symptoms as children, such as social isolation and repetitive behaviors. Several were misdiagnosed with mental health conditions, including anxiety and depression.

The Positives and Negatives of Diagnosis

While diagnosis was beneficial overall, it brought mixed emotions, primarily because the study participants said they were not provided with therapy or other interventions after they were diagnosed. They did say that they were more self-aware and better able to take control of their lives and address previously difficult situations, noted the ADDitude article. In fact, it was concerns over social functioning and relationships that pushed them to seek a diagnosis.

Writing on the Spectrum website, Donald McCarthy, who was diagnosed with autism at 28, notes that “many people go more than half of their lives before learning that they are autistic; the exact number remains a mystery, as research on adults with autism has been scarce.” He advocates for an expansion of services aimed at detecting autism in children so that more children will be diagnosed early, noting that girls, children of color, and children from low-income families often slip through the cracks.

In an article written for Psychology Today, Erin Bulluss, Ph.D., and Abby Witts describe the positive shift in how they view themselves after being diagnosed as adults: “While the path to diagnosis is hardly an easy one, for us, it provided the opportunity to re-examine our ways of doing, being, and thinking. This essentially led to a positive shift in self-concept, as we let go of maladaptive core beliefs about ourselves that were rooted in a lack of understanding of our own experience. ” Their lives, they write, “have now been split into pre- and post-diagnosis; taking us from a place of confusion, frustration, and obfuscation to a place of understanding, self-acceptance, and radical authenticity.”

Necessity of Post-Diagnosis Support

As the researchers noted in their paper, given the history of autism, it’s likely that many adults will receive a diagnosis of autism after the age of 50. For that reason, it’s important that health care professionals, social workers, and clinicians are able to recognize symptoms of ASD in adults. For example, all of the study participants felt different to the point of “being an alien” and experienced social isolation and peer rejection, the researchers wrote. Additionally, a representative from the UK’s National Autistic Society expressed in an article on BBC News that going so long without a diagnosis can have significant negative effects on mental health, increasing levels of anxiety and isolation.

The researchers recommended that people diagnosed late in life receive structured and comprehensive support, including help in reconfiguring their work environment to better suit their needs. Rahman Kebbie, who lives in the United Kingdom, was diagnosed in his mid-20s and is a good example of how support can make a big difference helping people deal with an adult diagnosis. Through a nonprofit, Kebbie has assistance with daily living tasks and the services of a job coach. He also participates in a support group. Even with that support, he notes in an article on that life is still often difficult primarily, he says, because autism is “invisible.”

Dr. Bulluss and Witts agree that more support is a necessity, writing that they were fortunate to have supports that not everybody who receives a late diagnosis has available. There should be, they write, “accessible, autism-positive resources… improved support in the community and clinical spaces to promote self-acceptance and well-being.”

The study authors called for future research in order to more accurately approximate the number of adults living with undiagnosed ASD. They recommended implementing ASD screenings for adults already utilizing other mental health services because of the prevalence of misdiagnosis and comorbidity with other mental health conditions. Greater awareness could also lead to more support and understanding for those diagnosed later in life.

Can You Develop Autism Spectrum Disorder Later In Life?

Perhaps you are a spouse wondering if your partner has Asperger’s, a friend, acquaintance or colleague of someone you suspect has it, or perhaps you wonder if you might have it yourself. How would you know?

In this chapter, I will explain how the process of diagnosing someone for Asperger’s is usually carried out, both in general terms and the specific way I undertake a diagnosis. I will describe the types of information that is sought in an assessment for Asperger’s and how that information is collected. I will answer the question of how accurate a diagnosis is, the confidence one can have in a diagnosis of Asperger’s and I will discuss the advantages and disadvantages of having a diagnosis.

The Diagnostic Process

Diagnosing Asperger’s is a fairly easy process in principle. But in practice it is complicated and necessities a professional who understands thoroughly not just the characteristics of Asperger’s but how they are played out in real life. Reading about Asperger’s in a book or articles generally makes it seem that Asperger’s is a clear cut, well defined and easily identifiable condition. In truth, people with Asperger’s behave in many different ways and not always exactly how it is defined.

For example, someone with Asperger’s can be quite intelligent and have mastery over numerous facts, yet have much less comprehension emotions and how they are expressed. The person may be able to identify basic emotions, such as intense anger, sadness or happiness yet lack an understanding of more subtle expressions of emotions such as confusion, jealousy or worry.

How is it possible to tell for sure if someone doesn’t understand subtle emotions? They often don’t come up while sitting in an office speaking to a professional and because the person is not aware of their presence it’s unlikely that person would volunteer how hard it is to understand them. Relying on a spouse’s or friend’s report about how someone recognizes emotions is not always advisable since those reports are filtered through the spouse or friends’ own biases and their own ways of understanding emotions.

The only way to tell is to be around someone long enough to experience what they are like, to see how they respond in situations that test the features of Asperger’s and ask the right kinds of questions to clarify whether they have those features. There is test yet developed that can be used to make a diagnosis of Asperger’s, no instrument that measures Asperger’s nor any procedure that can objectively sort out those with Asperger’s from those without it. Brain scans, blood tests, X-rays and other physical examinations cannot tell whether anyone has Asperger’s.

The bottom line is that Asperger’s is a descriptive diagnosis. A person is diagnosed based on the signs and symptoms he or she has rather than the results of a specific laboratory or other type of test. Those signs and symptoms are often subtle and it takes someone with considerable experience to tell whether they are present and, if so, whether there is enough of a case to say confidently that the person has Asperger’s. It is all a matter of confidence, that is, with very few exceptions no one can say that someone else has Asperger’s only that one has a certain degree of certainty that a person does have Asperger’s.

Diagnosing Asperger’s

With this in mind, what is the actual process of finding out whether someone has Asperger’s?

Other professionals may take different steps but I have a clear-cut procedure that I go through when asked to assess Asperger’s. I first determine whether it makes reasonable sense to undertake an assessment of Asperger’s. The assessment process itself is time consuming and it can be costly. Why go through with it if there is no good reason to assume there might be some likelihood of finding the behaviors and signs of Asperger’s? After all, you wouldn’t go to the trouble of evaluating whether you have a broken foot if, in the first place, there is absolutely nothing wrong with your foot.

Screening Questionnaires:

Currently there are nine screening questionnaires that are used to identify adults who may have Asperger’s. Most require the respondent to indicate whether he or she agrees with a statement related to Asperger’s. 

Examples of actual statements are:

  • I find it difficult to imagine what it would be like to be someone else.
  • The phrase, “He wears his heart on his sleeve,” does not make sense to me.
  • I miss my best friends or family when we are apart for a long time.
  • It is difficult for me to understand how other people are feeling when we are talking.
  • I feel very comfortable with dating or being in social situations with others.
  • I find it easy to “read between the lines” when someone is talking to me.

Completing one or more of these questionnaires can identify abilities, inclinations and behavior that could be indicative of Asperger’s syndrome. The results might suggest that it makes sense to investigate further if enough criteria are present to indicate a diagnosis of Asperger’s.

The questionnaires and scales for adults are as follows, in alphabetical order:

  • Adult Asperger Assessment (AAA) (include link, for each test below)
  • Aspie Quiz (AQ)
  • Autism Spectrum Quotient (AQ)
  • Empathy Quotient for Adults (EQA)
  • Friendship and Relationship Quotient (FQ)
  • Ritvo Autism Asperger Diagnostic Scale (RAADS)
  • Social Stories Questionnaire (SSQ)
  • Systematizing Quotient (SQ)
  • The Reading the Mind in the Eyes Test (RMET)

These questionnaires indicate whether a person has characteristics that match those of people with Asperger’s but that, in and of itself, doesn’t prove someone has or doesn’t have Asperger’s. The person filling out the questionnaire may be responding to the questions with the intention, conscious or not, of demonstrating that they don’t have, or for that matter they do have, Asperger’s. Often people answer these questions based on what they know about Asperger’s, they’ve read or been told about it, or what they imagine it is, and what they are indicating in their answers is not a accurate reflection of the characteristics they actually have.

Again, screening questionnaires are designed to identify potential cases of Asperger’s syndrome but they are not a substitute for a thorough diagnostic assessment.

To do that, an experienced professional needs investigate two things: the person’s medical, developmental, social, family and academic history; and how the person responds to a face-to-face assessment of social reasoning, communication of emotions, language abilities, focused interests, and non-verbal social interaction.

Personal History

Diagnoses are most valid and accurate when they are based on multiple sources of information. One highly important source are any documents, including reports, evaluations, notices, or assessments, that speak to the person’s social, emotional, language, and physical growth. An example is previous medical reports documenting signs of early language delays and/or peculiarities, coordination problems, behavioral difficulties or unusual physical problems. School reports might indicate past social and emotional difficulties, along with academic tendencies, that could be relevant to any indications of Asperger’s syndrome. Tutoring reports, evaluations of group activities, personal diaries, family recordings and other such records often provide valuable insights about the likelihood of Asperger’s.

It is often the case that a person seeking an evaluation does not have any documentation, formal or informal, that is relevant to the assessment process. That is not an insurmountable problem. We work with what we have, and a diagnosis, either way, doesn’t depend upon any one piece of the assessment process. I have had many cases where I was able to conclude with confidence whether the person had Asperger’s without seeing one single piece of written evidence about that person’s past. It helps when that evidence is available but it is not critical.

Clinical Interview

Sitting down and talking to someone makes the difference between an assessment of Asperger’s that has a high degree of confidence and one that is questionable. When I assess someone for Asperger’s I ask to meet face-to-face for three meetings.

The first meeting covers general facts about the person, particular those relating to his or her present life. I want to find out about the person’s significant relationships, whether they are friends, work colleagues, spouse or partner, children or anyone else with whom the person interacts regularly. I am interested in how the person gets along at work and his or her work performance, how the person manages daily living, what initiative the person takes in planning and achieving life goals, and how satisfied the person is with his or her life. These questions help me assess whether the person’s attitudes towards life, conduct in relationships, and general success in achieving life goals reveal any of the characteristics that typically are found in people with Asperger’s.

The second meeting focuses on the person’s background, particularly information about the person’s early family life; previous school experiences; past friendships, employment and intimate relationships; childhood emotional development and functioning, and significant interests throughout the person’s life. Because Asperger’s is a condition that exists at or before birth, clues about the presence of Asperger’s are found in the history of the person’s childhood. Hence a thorough understanding of early social, emotional, family, academic and behavioral experiences are essential to the diagnostic process.

The third and final meeting is a time to clarify questions that were not completely answered in the previous meetings, gather additional information and raise additional questions that have emerged from the information collected so far. When everything has been addressed to the extent allowed in this timeframe, the final part of the clinical interview is the presentation of my findings.

Presenting these findings is a multi-step process. First, I explain that certain characteristics are central to Asperger’s syndrome. If those characteristics are not present in the person then he or she doesn’t have Asperger’s and if they are present a diagnosis of Asperger’s is much more viable.

There are also characteristics that are related to Asperger’s but are also shared by other conditions. An example of this is difficulty noticing whether people are bored or not listening in conversations. Lots of people don’t pay much attention to whether people are listening to them, but that doesn’t mean they have Asperger’s. On the other hand, in combination with other signs of Asperger’s, not noticing how people respond in conversations, could be a significant confirmation of an Asperger’s diagnosis.

To diagnosis and adult with Asperger’s requires that the person have:

  • Persistent difficulty in communicating with, and relating to, other people. Their conversations have to be generally one-sided. There has to be reduced sharing of interests and a lack of emotional give-and-take. Superficial social contact, niceties, passing time with others are of little interest. Little or too much detail is included in conversation, and there is difficulty in recognizing when the listener is interested or bored.
  • Poor nonverbal communication, which translates into poor eye contact, unusual body language, inappropriate gestures and facial expressions.
  • Difficulty developing, maintaining and understanding relationships.
  • Narrow, repetitive behaviors and interests. Examples of these are insisting on inflexible routines, eating the same foods daily, brushing teeth the same way, following the same route every day, repeatedly rejecting changes in one’s life style, being either very reactive or hardly reactive at all to changes in one’s environment like indifference to temperature changes, hypersensitivity to sounds, fascination with lights or movement.
  • Signs of these characteristics as early as 12-24 months of age, although the difficulties with social communication and relationships typically become apparent later in childhood.
  • Indications that these characteristics are causing significant problems in relationships, work or other important areas of the person’s life.
  • Clear evidence that these characteristics are not caused by low intelligence or broad, across-the-board delays in overall development.

What happens if someone has some of these difficulties but not all? Do they qualify for a diagnosis of Asperger’s, or not?

The answer lies in how much these characteristics affect the person’s social, occupational or other important areas of functioning. If, for example, the core characteristics of Asperger’s lead a person to speak in few sentences, interact with people only around very narrow, special interests and communicate in odd, nonverbal ways, we can say that these are indicators that a diagnosis of Asperger’s is correct.

If, on the other hand, the person engages in limited back-and-forth communication, attempts to make friends in odd and typically unsuccessful ways, and is not especially interested in reaching out to others, a diagnosis of Asperger’s could be considered but not assured.

A diagnosis is most assured when the signs of Asperger’s are present in the person all the time, they have an obvious effect on the person’s ability to be successful in life, and don’t vary much. Additionally, when the information used to make a diagnosis comes from multiple sources, like family history, an expert’s observations, school, medical and other reports, questionnaires and standardized test instruments the diagnosis is likely to be more accurate and reliable.

Advantages and Disadvantages of an Asperger’s Diagnosis

The advantages of having an accurate, reliable diagnosis of Asperger’s are many. It can eliminate the worry that a person is severely mentally ill. It can support the idea that the person has genuine difficulties arising from a real, legitimate condition. Other people, once they are aware that the person has Asperger’s are often able to be more accepting and supportive. A new, and more accurate, understanding of the person can lead to appreciation and respect for what the person is coping with.

Knowing someone has Asperger’s opens up avenues to resources for help as well as access to programs to improve social inclusion and emotional management. Acceptance by friends and family members is more likely. An acceptable explanation to other people about the person’s behavior is now available leading to the possibility of reconciliation with people who have had problems with the person’s behavior.

In the workplace and in educational settings, a diagnosis of Asperger’s can provide access to helpful resources and support that might otherwise not have been available. Employers are more likely to understand the ability and needs of an employee should that employee make the diagnosis known. Accommodations can be requested and a rationale can be provided based on a known diagnosis.

Having the diagnosis is a relief for many people. It provides a means of understanding why someone feels and thinks differently than others. It can be exciting to consider how one’s life can change for the better knowing what one is dealing with. There can be a new sense of personal validation and optimism, of not being defective, weird or crazy. With the knowledge that one has Asperger’s, joining a support group, locally or through the Internet can provide a sense of belonging to a distinct and valued culture and enable the person to consult members of the group for advice and support.

Acceptance of the diagnosis can be an important stage in the development of successful adult intimate relationships. It also enables therapists, counselors and other professionals to provide the correct treatment options should the person seek assistance.

Liane Holliday Willey is an educator, author and speaker. She was diagnosis with Asperger’s syndrome in 1999. In her 2001 book, “Asperger’s Syndrome in the Family: Redefining Normal in the Family, she wrote the following self-affirmation pledge for those with Asperger’s syndrome.

– I am not defective. I am different.– I will not sacrifice myself-worth for peer acceptance.– I am a good and interesting person.– I will take pride in myself.– I am capable of getting along with society.– I will ask for help when I need it.– I am a person who is worthy of others’ respect and acceptance.– I will find a career interest that is well suited to my abilities and interests.– I will be patient with those who need time to understand me.– I am never going to give up on myself.– I will accept myself for who I am.(Willey 2001. p. 164)

Are there disadvantages to a diagnosis of Asperger’s? Yes, but the list is shorter than the list of advantages.

Some people receive a diagnosis of Asperger’s with discouragement and disapproval, believing they necessarily will be severely limited in how they can lead their lives. No longer will they be able to hope to have a satisfying, intimate relationship. Instead, their future will be filled with loneliness and alienation from others with no expectation of improvement. This, of course, is an unrealistic and exaggerated depiction of what living with Asperger’s is like.

Of course, it is possible that people in someone’s life will react to the diagnosis of Asperger’s by alienating themselves from that person. Stigmatizing and disapproval, based on the knowledge that a person has Asperger’s is still prevalent in our society. Damage to one’s self-esteem as a result of disapproval, ridicule, discrimination and rejection is possible when knowledge of an Asperger’s diagnosis is disseminated.

Job discrimination is a realistic possibility in the event that an applicant reveals an Asperger’s diagnosis. While it is not legally acceptable to do so, we know that silent discrimination happens, hiring decisions are not always made public and competition can leave someone with a different profile out of the picture.

Similarly, having a diagnosis of Asperger’s may lead others to assume the person will never be able to be as successful in life as neurotypical people. It is commonly assumed that Asperger’s makes someone too difficult to be around, unable to get along with people, too narrowly focused on their own interests, and too stubborn, self-absorbed and lacking in empathy to be a contributing member of society, a view that is narrow in its own right and sadly mistaken in many cases. Nevertheless, attitudes like this can arise when a diagnosis of Asperger’s is made public.

Dual Diagnoses

Often, people tell me when we meet to discuss an Asperger’s evaluation that the symptoms of Asperger’s they have seen, usually online, match what they notice in themselves. Just as often other people, in researching Asperger’s symptoms, believe the person coming to see me has those very characteristics and therefore must have Asperger’s.

The problem with this is that several other conditions share many of the same symptoms with Asperger’s. Just knowing how the person behaves, thinks and feels does not, in and of itself, tell you whether he or she has Asperger’s. It very well might be that some other condition is the real problem or, more likely, two or more conditions are overlapping. In this case, it is more accurate to say the person has co-existing conditions rather than it being a straightforward matter of Asperger’s.

Here is a description of the psychiatric conditions most frequently associated with Aspergers’:

Attention Deficit Hyperactivity Disorder (ADHD)

People with ADHD typically have difficulty paying attention to what’s going on around them, they are easily distracted, they tend to do things without thinking about the results, they are often forgetful, have trouble finishing what they intended to do, are disorganized, jump from one activity to another, are restless and have poor social skills.

Many of these symptoms overlap with those of Asperger’s. Research has shown growing evidence for a connection between Asperger’s and ADHD. Genetic studies suggest the two disorders share genetic risk factors, and studies of the incidence and distribution of both conditions confirm that many people with Asperger’s have symptoms of ADHD and vice versa. Brain imaging and studies of the brain structure show similarities between the two disorders.

Having said that, there are important differences between the two. People with ADHD often try to do multiple activities at the same time. They get distracted easily and jump from one interest or activity to another. Focusing on one thing for a long time is hard for them. On the other hand, people with Asperger’s tend to focus on only one activity at a time, and they focus on that activity intensely with little regard for anything else going on around them. They are hyper-focused rather than unfocused.

There is a similar difference with respect to impulsivity. People with ADHD will do things without considering the outcome of their actions. They act immediately and have trouble waiting. They interrupt, blurt out comments and seem unable to restrain themselves.

People with Asperger’s think through their actions more carefully. They may interrupt and say things without regard for whatever else is going on but it is because they don’t understand how conversations are carried out rather than not being able to restrain themselves.

There is a big difference in how adults with ADHD use language compared to adults with Asperger’s. They do not tend to have specific weaknesses in their understanding and use of language. They readily understand when a statement such as, “it’s raining cats and dogs” is being used as a figure of speak and not as a literal statement. They also speak with a normal tone of voice and inflection.

In contrast, adults with Asperger’s tend not to understand non-literal language, slang or implied meanings. They may talk a lot and have more one-sided conversations as do adults with ADHD but they do so because lacking an understanding of how the person they are talking to is grasping what they are saying they are, in effect, talking to themselves.

Difficulty interpreting non-verbal communication and subtle aspects of how people relate to each other is characteristic of adults with Asperger’s. They confuse behaviors that may be appropriate in one setting from those that are appropriate in another, so that they often act in appropriate for the situation they are in. They find it hard to interpret the meanings of facial expressions and body posture, and they have particular difficulty understanding how people express their emotions.

Adults with ADHD, on the other hand, understand social situations more accurately and they engage much easier in social situations even though they are easily distracted and often not observant of what’s going on around them. They can consider what other people are thinking much easier than adults with Asperger’s and they participate in the give-and-take of social interactions more readily.

Adults with ADHD tend to express their feelings directly and fairly clearly whereas adults with Asperger’s do not show a wide range of emotions. When they do communicate their feelings they are often out of synch with the situation that generated the feeling.

Adults with ADHD tend to process sensory input in a typical manner. They may have preferences for how they handle sensory input like music, touch, sounds, and visual sensations but generally the way they handle these situations is much like other adults.

In contrast, adults with Asperger’s have more specific preferences about the kind of sensations they like and dislike. They may be overly sensitive to one kind of sensation and avoid that persistently. Or they may prefer a certain type of sensation and, a certain type of music, for example, and seek it over and over. Overall, sounds, temperature differences, visual images and tastes more easily overwhelm adults with Asperger’s than adults with ADHD.

Obsessive-Compulsive Disorders

The core features of obsessive-compulsive disorder (OCD) are frequent and persistent thoughts, impulses or images that are experienced as unwelcomed and uninvited. It occurs to the person that these intrusive thoughts are the produce of his or her own mind but they can’t be stopped. Along with these thoughts are repetitive behaviors or mental acts that the person feels driven to perform in order to reduce stress or to prevent something bad from happening.

Some people spend hours washing themselves or cleaning their surroundings in order to reduce their fear that germs, dirt or chemicals will infect them. Others repeat behaviors or say names or phrases over and over hoping to guard against some unknown harm. To reduce the fear of harming oneself or others by, for example, forgetting to lock the door or turn off the gas stove, some people develop checking rituals. Still others silently pray or say phrases to reduce anxiety or prevent a dreaded future event while others will put objects in a certain order or arrange things perfects in order to reduce discomfort.

These behaviors, to repeat the same action over and over, are similar to the repetitive routines associated with Asperger’s. Individuals with both conditions engage in repetitive behaviors and resist the thought of changing them. The difference is that people with Asperger’s do not view these behaviors are unwelcomed. Indeed, they are usually enjoyed. In addition, whereas Asperger’s occurs early in the person’s life, OCD develops later in life. People with OCD have better social skills, empathy and social give and take than those with Asperger’s.

Social Anxiety Disorder

Social Anxiety Disorder, also called social phobia, occurs when a person has a fear of social situations that is excessive and unreasonable. The dominate fear associated with social situations is of being closely watched, judged and criticized by others. The person is afraid that he or she will make mistakes, look bad and be embarrassed or humiliated in front of others. This can reach a point where social situations are avoided completely.

Asperger’s and Social Anxiety Disorder share the common element of discomfort in social situations. Typically, along with this discomfort is lack of eye contact and difficulty communicating effectively.

The difference between these two conditions is that people with Social Anxiety Disorder lack self-confidence and expect rejection if and when they engage with others. Adults with Asperger’s, on the other hand, don’t necessarily lack self-confidence or are afraid of being rejected, they are simply not able to pick up on social cues. They don’t know how to act appropriately in social situations and thus tend to avoid them. In addition, Social Anxiety Disorder may be present in children but more commonly it develops in adolescence and adulthood whereas Asperger’s can be traced back to infancy.

Schizoid Personality Disorder

People with Schizoid Personality Disorder (SPD) avoid social relationships and prefer to spend time alone. They have a very restricted range of emotions, especially when communicating with others and appear to lack a desire for intimacy. Their lives seem directionless and they appear to drift along in life. They have few friends, date infrequently if at all, and often have trouble in work settings where involvement with other people is necessary. They are the type of person that is others think of as the typical “loner.”

A noticeable characteristic of someone with SPD is their difficulty expressing anger, even when they are directly provoked. They tend to react passively to difficult circumstances, as if they are directionless and are drifting along in life. They are withdrawn because it makes life easier. They don’t gain a great deal of happiness from getting close to people. Often this gives others the impression that they lack emotion.

While this may strike some as similar to Asperger’s people with SPD can interact with others normally, if they want to, and can get along with people. They don’t have the strong preference for logical patterns in things and people, an inability to read facial expressions or “blindness” to what is going on in other people’s minds that characterizes Asperger’s.

In addition, people with SPD typically do not show these features until late adolescence or adulthood. The characteristics of Asperger’s must be noticeable in infancy or early childhood to receive the diagnosis of Asperger’s.

Most importantly, Asperger’s is a form of autism whereas people with SPD have a “neurotypical” brain and have developed into a personality of extreme introversion and emotional detachment.

Antisocial Personality Disorder

Individuals with Antisocial Personality Disorder (APD) disregard and violate the rights of others. They don’t conform to social norms with respect to lawful behavior, such as destroying property, stealing, harassing others, and cheating. They are frequently deceitful and manipulative so as to obtain money, sex, power of some other form of personal profit or pleasure. They tend to be irritable and aggressive and to get into physical fights or commit acts of physical assault (including spousal or child beating).

They are consistently and extremely irresponsible financially, in their employment, and with regard to their own safety and the safety of others. They show little remorse for the consequence of their actions and tend to be indifferent to the hurt they have caused others. Instead, they blame victims of their aggression, irresponsibility and exploitation. They frequently lack empathy and tend to be callous, cynical and contemptuous of the feelings, rights and suffering of others.

They often have an inflated and arrogant view of themselves, and are described as excessively opinionated and cocky. They can appear charming and talk with superficial ease, attempting to impress others and appear experts on numerous topics.

There may appear to be some overlap between Asperger’s and APD, but the resemblance is superficial. Individuals with Asperger’s have trouble understanding how people operate but they do respect others, whereas people with APD have no regard for people. Individuals with Asperger’s are rarely deceitful, in fact, they are often considered excessively, even naively honest, quite unlike those with APD who are predictably deceitful and unremorseful, and unlike people with Asperger’s they are incapable of feeling genuine love. Asperger’s people do show and feel remorse whereas people with APD do not.

Bipolar Disorder

People with Bipolar Disorder (BD) have distinct ups and downs in their mood. At one point, they will have extreme energy, be unusually happy, energetic, talkative, feel wonderful about themselves and “on top of the world, have little need for sleep, be drawn to unimportant or irrelevant activities, and generally act unlike themselves. When they are down, they feel sad, empty, hopeless, worthless and inappropriately guilty. They have little interest in their usual activities, have little appetite, sleep more than usual, are slowed down, have difficulty concentrating and sometimes have suicidal thoughts.

When someone with Bipolar Disorder is in a manic state or depressed they may not interact socially as they might if they were feeling normal, they might be withdrawn, lack much emotional response to situations in their life and lose interest in relationships but the changes in their emotional condition is much different than people with Asperger’s.

Someone with Asperger’s is socially awkward, cannot read or use body language or facial expressions well, have difficulty making eye contact, cannot understand sarcasm and jokes, tend to take things literally, may display socially inappropriate behavior without realizing it, have obsessive interests and may have problems with sensory issues.

While they may feel down at times or at other times be unusually happy, their concerns have much less to do with emotional ups and downs.

Autism "Adult": How to live for those diagnosed with autism as adults

  • Eva Ontiveros
  • BBC World Service

Image copyright, Getty Images

Image caption,

A diagnosis, no matter how late it is, can help a person cope with daily life with greater confidence

"I was finally able to figure out what was wrong with me. You can't imagine how relieved I felt!" - says Sudhanshu Grover in an interview with the BBC.

"I have two sons with autism and I work with children with autism, but I never knew this was the case for me," says Sudhanshu. She lives in New Delhi and was diagnosed when she was about 40

  • Interview: people with autism see the world differently
  • "Life with autism": an educational program that is never superfluous

"That explained everything in my life!" echoes Alice Rowe, who was also diagnosed in adulthood.

"I have lived my whole life in anxiety and isolation, feeling that I am different from others. It seemed to me that my life was much less understood than others. It was very comforting and helpful to realize that my problem had a rationale, and that I I'm not alone in this," says Alice, who lives in the UK.

To celebrate World Autism Awareness Day, the BBC talks about autism and how it can make a difference in people's lives.

Autism in adulthood

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Many live feeling "different" but don't understand why they feel that way

Get worldwide data on autism spectrum disorders (ASD) ) is often difficult because the condition is not equally recognized and diagnosed in different countries.

According to the World Health Organization, 1 in 160 children worldwide have an autism spectrum disorder (ASD), but reliable global data for adults are not yet available.

The Centers for Disease Control and Prevention (CDC) estimates that in the United States, where data has been collected systematically, 2.21% of the adult population has ASD.

WHO describes ASD as a developmental disorder that affects communication and behavior and can be diagnosed at any age.

Autism refers to a whole range of such disorders: each person with autism has different combinations of autistic traits with varying degrees of intensity.

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It is usually discovered in childhood because symptoms usually appear in the first two years of life, but many people only realize they are living with autism as adults or are not diagnosed at all.

Late diagnosis is especially common in women. One reason for this may be that women are often better at copying the social cues they see around them, hiding or masking unusual behavior from those around them.

It is important to note that autism is not a disease. The brain of a person with ASD works differently than the brains of other people, according to the website of the British National Health Service.

There is no cure for autism - if you have autism, it's for life - but people with ASD can greatly benefit from the right support, tailored to their specific needs.

Why are not all cases of ASD detected?

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"ASD is a complex condition that can't be 'seen'," says Alice

Sudhanshu Grover is Head of Education Services at Action for Autism, an Indian non-profit organization.

"My children were diagnosed 20 years ago, at the age of three. That's why I started working with children with autism," says Sudhanshu. "But I myself never thought that I could also have autism."

For two decades, Sudhanshu has worked with children and parents to help them better understand autism.

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It wasn't until she was 48 that she began to wonder if she might also have autism.

“I started noticing how difficult it was for me to communicate with people and how difficult it was for them to understand things the way I wanted them to… or they understood things differently than I do,” she says. “It was generally difficult for me to communicate and make friends… I thought it was all about shyness. When I got along with people, I did it well, so I always had one or two close friends, but never large groups of acquaintances. "

But more and more often Sudhanshu realized that communication was not easy for her: "I just went dumb when the situation was too tense. Or I analyzed it too carefully."

By now, Sudhanshu knew enough about autism to understand that it doesn't just affect children, and that many adults may not be aware of their diagnosis for life.

"Given the opportunities, conditions and benefits available to people with autism in India, I knew that at my age I would not be diagnosed in a public hospital," says Sudhanshu, "so I had to turn to a private company."

"It's been almost a year and a half and I'm still trying to figure out what it means to me. I haven't fully realized it yet, but I've been able to understand why sometimes I act the way I do," she says.

In the end, there were positive aspects to this diagnosis.

"I work with children with autism. When parents ask how their children's lives might turn out, I tell them about my own autism. I'm very open about this because I think things will change when people start paying more attention." what you do. It makes everyone's life easier," says Sudhanshu.

Fighting prejudice

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Sylvia Moraa Mochabo: "Autism diagnosis can label you in society and not everyone is willing to carry that burden"

"On the African continent it is very difficult for adults to simply accept this diagnosis," Silvia Moraa Mochabo tells the BBC. "Autism is still perceived as a stigma in society."

Sylvia is a technology entrepreneur in Kenya and founder of Andy Speaks 4 Special Needs Persons Africa.

Under the pseudonyms Ms. Africa Elite 2020, Ms. Africa United Nation 2020 and Ms. Elite Face of Africa 2020 she also leads an outreach campaign on neurodevelopmental disorders and autism.

"Lack of knowledge leads to a lack of diagnosis at a later age. In three years, I have only been aware of three cases of autism in adults. But even children are not diagnosed by doctors, and we lack early diagnosis," Silvia adds.

Two of her three sons have autism and Sylvia worries they won't be able to live a fulfilling life because "bearing the stigma of being autistic is still a very big problem for an adult."

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Natalia works in the media and was diagnosed with ASD in adulthood. She does not want to reveal her full name because it has already affected her work in the past.

"We all have dreams and a desire to succeed in life... it doesn't go away because we're different. We all share the same basic feelings and aspirations," she says.

"I know quite a few people who just live without an official diagnosis. They know that they are different from others, but they have enough opportunities to adapt," adds Natalia.

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"Autism affects the way a person thinks, so it's hard to diagnose based on someone's thoughts," says Alice

But Sylvia says it's worse not to know what's happening to you: "The curriculum of our doctors does not address ASD in detail. So when they see a patient with certain characteristics - a child or an adult - they may not think that it is autism. As a result, the diagnosis is not made, and people continue to live with this disease without even understanding what it is."

"In our culture, if you engage in certain behaviors, you will be labeled as 'mentally ill'," Sylvia says. "It carries a lot of negative connotations, so it's not surprising that people tend to avoid this stigma and look for other coping mechanisms to cope with problems, but what if there is no such possibility?

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According to Sylvia, reaching adulthood with undiagnosed autism can make life very difficult for a person.

"If students with certain problems are not helped, they are more likely to drop out. By the time you are an adult, you have already been labeled as 'stubborn' or 'stupid' and no one thinks that autism can be the reason for this ".

However, for many in Africa, being diagnosed with autism is "terrible news," Sylvia says. "However, this does not mean a disaster," she says. "We must continue to work with this person in order to bring out his best side."

Sylvia says that she knows from her work and her own experience as a parent that acceptance of people with autism for who they are is key for both the individual and society.

"What do you need? Help with sensory issues? Speech therapist? You must have access to the right treatment if you want to be more active in the community. It's impossible to support a person or look for the right treatments if you don't understand what they need and what they experience," she says.

Why diagnose an adult?

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"The benefit of a diagnosis is a better relationship," says Alice

"I would advise all adults who think they may have a disease on the ASD spectrum to get a diagnosis because it gives a deeper understanding of the problem. When you know what you are facing, you can be better prepared for the problems you are going to face." collide," says Sylvia.

Sudhanshu agrees: "Now I realize that I know people who were no different from me, but got better grades or were more successful in life because they didn't have to deal with the features and disadvantages of such a life on a daily basis."

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"There was so much going on in my head but I could never figure it out. There were things I really couldn't do, so now that I've been diagnosed, I feel so much better" - she says with relief.

Alice Rowe, a writer and entrepreneur who was diagnosed at 23, understands the relief.

"I would feel a lot less isolated and unhappy if I knew there were other people who felt the same way as me. As a teenager, I felt very lonely," says Alice.

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Alice: "My friends now understand that I need a lot of time to myself and I don't mind spending too little time with them"

That's it inspired her to create The Curly Hair Project, a social project to support people with autism and their loved ones.

"Probably a lot of people don't get diagnosed at an early age because they feel like everyone has the same problems and they just have to 'try their best,'" says Alice.

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Sometimes "people with autism don't even realize they're 'different', and some may even deny it, so they take their time getting a diagnosis," she adds.

Alice's diagnosis really helped: "My friends now understand me better and we have a stronger relationship. I also feel that I can be myself among people, pretending to be less like them. For good mental health, this is really important ".

Understanding the "invisible state"

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"It would be nice if more people accepted rather than condemned this state," says Sudhanshu

"It's hard to explain to people that I have some problems because they don't see them. My diagnosis came as a surprise to many of my old friends and acquaintances," says Alice.

Sudhanshu agrees. "Without understanding these features, everyday life is difficult. And even if you have a diagnosis, people don't always understand them."

"There are a lot of things that can be difficult to deal with: noise, smells, crowded places... when you have autism, life can be very difficult because even simple everyday things give you away," adds Sudhanshu.

"Some problems are so trivial that others can't even imagine that they are really problems," says Alice. a slight change in plans can ruin your whole day and keep you awake at night, or that it might not be obvious to you how to use the turnstile because you can't figure out where to drop your ticket and which turnstile to go through?"

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In some ways, restrictions during a pandemic can help people who don't have autism understand what it's like to be stressed when someone invades your personal space or touches your things.

"Now everyone understands how people like me live!" Alice says.

"I've always been hygienic, and it's physically more comfortable for me to be two meters away from others," she adds.

Help yourself

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"We all have the same feelings and aspirations," says Natalia

"Diagnosis is not the answer to all your problems, but in some cases it can be useful if it helps to get help or be understood by others," says Natalia. "It can also help you accept yourself for who you are and not feel like an eccentric. If you look closely, we are all a little eccentric" .

"Knowing that I am a person with autism helps me prepare and better deal with problems or avoid uncomfortable situations," says Sudhanshu.

Alice agrees: "Now that I'm older, it's easier for me to live because I understand myself better, and this understanding really improved after I was diagnosed with Asperger's syndrome [formerly used as an autism spectrum diagnosis, now part of ASD It also helps that others now know a lot more about autism."

Sudhanshu advises to properly study the problem and tell others about it: "Autism is for life, so the more you know about it, the easier it will be for you to live."

signs and diagnosis. How to recognize autism

Autism in adults - symptoms, causes and classification of the disease. How is autism different from autism spectrum disorder. External signs of an autist, the possibility of rehabilitation and social adaptation, the main directions of treatment. The importance of the Internet for adults with autism as a means of communication and virtual socialization. Everything related to autism in adults, we decided to find out in an interview with the Chief Physician of the Health Harmony Medical Center, a psychiatrist, psychiatrist-narcologist and psychotherapist Vladislav Sipovich.

What is autism and autism spectrum disorder, what is the difference?

Autism has many synonyms. It is also called infantile, childhood, early infantile autism, as well as Kanner's syndrome or autism, in the American DSM-IV classification it is called autistic disorder. All these are the names of a disorder associated with impaired brain development (GM) and manifested by such main symptoms, the so-called triad:
• Difficulty or complete impossibility of establishing social ties and communication.
• Restrictions on areas of interest.
• Repetitive compulsions. Learn more about obsessive-compulsive disorder syndrome.

Other symptoms are characteristic, but not decisive in the diagnosis of autism. They can manifest as:
• Inadequate response to stimuli, when a strong stimulus is ignored, and the reaction to a weak one is excessive. For example, the slightest noise can cause crying and screaming, and loud speech does not attract attention.
• Selectivity in food.
• Perfectionism, etc.

True autism develops in early childhood, the first pronounced signs appear before the age of 3 years. It is simply impossible not to notice them, unlike autism spectrum disorder (ASD), which has milder symptoms and therefore can go undiagnosed. There is a theory that autism in adults is an autism spectrum disorder not noticed in childhood.

What causes autism and how common is it?

The etiology of autism has not been fully elucidated. The genetic theory of the origin of autism is generally accepted, which is confirmed by cases of multiple development of autism or ASD in families. For example, when a mother and two out of three children suffer from ASD. It is believed that this process involves the genes responsible for the maturation of connections in the GM synapses. But how this happens - whether due to a mutation in a single gene, or due to multiple mutations - is not clear. The most reliable is the assumption that during meiosis (the process of formation of germ cells with a half set of chromosomes), when they diverge, deletions are observed (loss of one of the genes) or the entry into the genome of two identical genes - duplications. As a result of such chromosomal aberrations, germ cells undergo mutations, which are later inherited, more often through the maternal line.

Almost all teratogens can be factors leading to an increased risk of mutations, ie. substances that cause birth defects. They have the strongest effect on the fetus in the first 8 weeks of pregnancy.

Other factors that increase the risk of developing autistic disorders or complicate them are:
1. Infectious diseases.
2. Disorders of metabolism and development of bone tissue.
3. Ingestion of harmful substances, namely:
• Exhaust gases from diesel engines
• Heavy metals.
• Phthalates and phenols in plastics.
• Pesticides.
• Bromine-containing substances.
• GMO-containing foods.
4. The triad of vices - smoking, alcohol, drugs.

The risk of having children with autism is significantly increased by stressful conditions during pregnancy, intrauterine infections of the fetus, certain medications taken by pregnant women, as well as asthma, fever, obesity or malnutrition in a pregnant woman.
In addition, it is generally recognized that autism progresses rapidly in an unfavorable psychological environment, as well as severe physical and mental overwork.

For some time, there was an assumption that the development of autism in children was associated with their vaccination against measles, and specifically with the mercury-containing substance thiomersal in the composition of the vaccine. But scientific studies have not confirmed this assumption.

Some experts attribute the development of autism to the hyperactivity of the immune system in the direction of strengthening autoimmune processes in relation to one's own neurons and their synapses.
Currently, the scientific medical community is inclined to the idea that autism is a complex disorder caused by separate etiological factors, often acting simultaneously.

The incidence of autism is 1-2 people per 1000, and ASD - 6 people per 1000. With the growth of diagnostic efficiency, these figures have begun to grow, but there is no reason to talk about a specific increase in the incidence. By the way, ASD is 4 times more common in boys than in girls.

What are the most typical signs of autism in adults?

ASD, especially in mild autism in adults, is often confused with depression, bad mood, stressful conditions, etc. Therefore, the question of how to recognize autism in adults is quite relevant. Establishing the correct diagnosis will allow you to understand in a timely manner what is happening to the person and help him. Indeed, suffering from autism in adulthood, a person does not understand why it is difficult for him to communicate with other people, why he reacts to certain circumstances differently than others, why he does not find it funny when everyone laughs at a good joke, why he does not know at all that this is a joke. This further reinforces autism “involuntarily”, when a person feels isolated from society and is burdened by this. In severe forms of congenital autism, a person does not feel the need for communication at all, which is not interesting to him and even annoying.

By the way, autism in adult men occurs 5 times more often than in the fairer sex, and the overall prevalence, according to statistics from British scientists, is 1 autistic per 100 healthy people.

Suspicion of autism in adults, the signs of which can be rather mild and, as it were, erased, can be based on the following symptoms: When meeting acquaintances, an autistic person pretends not to notice them and tries to pass by without saying hello. Communication with even likeable people is painful for a person with ASD.
• Unwillingness to look into the eyes of the interlocutor, or vice versa, too close, unblinking gaze.
• Ignoring former hobbies, narrowing the range of interests.
• A person does not perceive and does not react to events in the life of loved ones and his own.
• Loss of guilt, duty, responsibility, emotional impoverishment. A person does not experience any feelings at all, except for anger, anger and irritation.
• Feeling of unreality of what is happening, lack of orientation in time.
• Appearance of stereotyped movements, repetition of phrases from films, songs, etc.
• Perfectionism - the desire to do everything and arrange in a certain order. Hence the conservatism in dress, habits, skills, food, and so on. Some autistics, through constant repetition, hone certain skills to perfection, but this is by no means a sign of genius, as some believe. The slightest deviation from the rituals for an autist is simply unacceptable and causes extreme irritation.
• The constancy of the inner world. Any change in the course of life is perceived dramatically and can cause a negative reaction.
• Complete lack of sense of humor.
• Misunderstanding and ignoring the elementary rules of behavior, emotions, feelings and intentions of another person. Autistic people simply do not realize that their behavior or words can offend another person, associating him with an inanimate object. Only an autistic person, after listening to unflattering remarks in the team, can approach the boss and ask: “Are you really a fool?”.
• Inability to form romantic or friendly relationships due to lack of knowledge and communication skills.
• They hear about love, but they cannot feel this feeling, because they do not feel affection even for their relatives.
• Autistic people do not understand romantic gestures, kissing is considered meaningless, and hugging is perceived as a constraint on freedom of movement.
• Sexual feelings are familiar to them, but they cannot discuss them with others. All knowledge about sex is drawn from serials and films, often with pornographic content.

Even if a person has only a few of the above symptoms, an urgent consultation with a neurologist, psychiatrist or psychotherapist is necessary.
Outwardly, an adult autistic is given out by meager facial expressions, aversion of the eyes, a meager vocabulary and speech devoid of emotional coloring (like a cyborg).

What are the types of autism, what is its classification based on?

Autism, as a concept, combines several pathological conditions, namely:
• Autism proper, known as Kanner's syndrome/autism. This is the most severe form of the disease with a full range of symptoms. Patients are completely asocial, speech is undeveloped or absent altogether, the speech apparatus is atrophied. Cognitive abilities at the lowest level.
Moderate or severe mental retardation is noted, important nerve centers are not developed, therefore independent existence is impossible, constant supervision is necessary. In especially severe cases - hospitalization in specialized medical facilities.
• Asperger's Syndrome/Autism, which is a mild form of autism in which there are problems with socialization and communication, but without impairment of cognitive-verbal functions. Closure, strange behavior and some constraint do not prevent them from being absolutely independent and full-fledged members of society.
• Rett syndrome is a neuropsychiatric disorder in women. It manifests itself after a year of life and is accompanied by a rapid regression of the musculoskeletal and nervous systems, which cannot be stopped with medication. Usually, only rare women with this syndrome reach the age of thirty, so it is quite difficult to meet adult women with Rett syndrome.
• Atypical autism, which includes ASDs not identifiable by the first three forms, ie. all those that have atypical symptoms.

Asperger's syndrome and atypical autism are the most common in adults. However, they may be distinguished by high intelligence or other outstanding abilities, such as photographic memory. They can even make discoveries and achieve significant career growth. For example, the prominent artist Van Gogh had signs of autism, although the exact diagnosis of his mental disorder is still a mystery.

Through the differential diagnosis of autism in adults, it was possible to classify 5 groups of autistic people with different intensity of symptoms:
1. Patients with little to no interaction with the outside world. These are incurable patients who need daily care.
2. Closed people who rarely strive for communication, and then only on their own initiative. It is almost impossible to impose communication on them from outside. They like to be alone and spend hours doing one thing without sleep, food and rest. They also require daily supervision and organization of life.
3. People who do not understand and do not perceive the rules of conduct and social norms.
4. Autistic people who are easily offended and unable to confront problems on their own. They are quite difficult to distinguish from healthy ones, which can only be done by a psychotherapist or psychiatrist.
5. Autistic adults with above-average intelligence who have mutations not only for mild autism, but also for “genius” genes, which confirms the Van Gogh example.
By the way, studies have found that only 33% of people with autism are able to live independently or only occasionally need help.

What is autism in adults, we have already found out. But is it possible to get rid of it, or at least socially adapt the patient?

As for the possibility of a cure for autism, then, unfortunately, I will answer in the negative. Autism is forever, but it's not a death sentence yet. It all depends on how severe and how autism is manifested in adults, as well as the type of autistic disorder. It is practically impossible to help patients with autism proper, which manifested itself in early childhood. The complete lack of interaction with the outside world cannot be cured by either psychotherapy or medication. All that remains is the care of the sick in the family or in a specialized hospital institution.

Asperger's syndrome and atypical autism, the most common in adults, have a fairly large opportunity for social adaptation. People with a mild form of autism often come to a psychotherapist already sufficiently adapted in society, engaged in professional activities, and even having a family. They turn when the symptoms of the disease intensify, transform and begin to interfere with their implementation in society, i.e. when the problem escalates and others begin to notice it. It becomes more and more difficult for a person to imitate feelings that he does not experience, not to sleep at night from the inability to solve insignificant problems, to suffer from the consciousness that he is different from others and not understanding the reasons for his “exclusivity”. Fortunately, there are encouraging statistics that with early diagnosis and timely rehabilitation, more than 50% of autistic people begin to lead an independent lifestyle and do without the care of relatives.

Of course, it will not be possible to completely cure autism, but it is possible to teach the patient the basic skills of independent existence and communication, designating “what is good and what is bad” and thus correcting his behavior. In practice, treatment comes down to rehabilitation and social adaptation. The main direction is psychotherapeutic, in particular cognitive-behavioral therapy. Sometimes it is possible to prescribe antidepressants, antipsychotics, psychotropic and anticonvulsants to relieve symptoms, stabilize the condition, and when autism is associated with other mental disorders.

Can modern information technologies contribute to the social adaptation of people with autism?

Very interesting question. It has long been noted that autistic people have difficulty making direct verbal contact, but they are quite willing to communicate in various social networks. Special forums have even begun to appear on the Internet, where an autistic person can find a partner with the same disease. Correspondence allows you to establish friendly or personal relationships with a similar person, as well as organize various communities to protect your rights. Many autistic adults believe that autism is not a disease, but a unique way of thinking and relating to the world around them.

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