Autism Spectrum Disorder (ASD)

[MustafaTekin]

What is autism spectrum disorder?

Autism spectrum disorder (ASD) refers to a group of complex neurodevelopment disorders characterized by repetitive and characteristic patterns of behavior and difficulties with social communication and interaction. The symptoms are present from early childhood and affect daily functioning.

The term “spectrum” refers to the wide range of symptoms, skills, and levels of disability in functioning that can occur in people with ASD. Some children and adults with ASD are fully able to perform all activities of daily living while others require substantial support to perform basic activities. The Diagnostic and Statistical Manual of Mental Disorders (DSM-5, published in 2013) includes Asperger syndrome, childhood disintegrative disorder, and pervasive developmental disorders not otherwise specified (PDD-NOS) as part of ASD rather than as separate disorders. A diagnosis of ASD includes an assessment of intellectual disability and language impairment.

ASD occurs in every racial and ethnic group, and across all socioeconomic levels. However, boys are significantly more likely to develop ASD than girls. The latest analysis from the Centers for Disease Control and Prevention estimates that 1 in 68 children has ASD.


What are some common signs of ASD?
Even as infants, children with ASD may seem different, especially when compared to other children their own age. They may become overly focused on certain objects, rarely make eye contact, and fail to engage in typical babbling with their parents. In other cases, children may develop normally until the second or even third year of life, but then start to withdraw and become indifferent to social engagement.

The severity of ASD can vary greatly and is based on the degree to which social communication, insistence of sameness of activities and surroundings, and repetitive patterns of behavior affect the daily functioning of the individual.

Social impairment and communication difficulties
Many people with ASD find social interactions difficult. The mutual give-and-take nature of typical communication and interaction is often particularly challenging. Children with ASD may fail to respond to their names, avoid eye contact with other people, and only interact with others to achieve specific goals. Often children with ASD do not understand how to play or engage with other children and may prefer to be alone. People with ASD may find it difficult to understand other people’s feelings or talk about their own feelings.

People with ASD may have very different verbal abilities ranging from no speech at all to speech that is fluent, but awkward and inappropriate. Some children with ASD may have delayed speech and language skills, may repeat phrases, and give unrelated answers to questions. In addition, people with ASD can have a hard time using and understanding non-verbal cues such as gestures, body language, or tone of voice. For example, young children with ASD might not understand what it means to wave goodbye. People with ASD may also speak in flat, robot-like or a sing-song voice about a narrow range of favorite topics, with little regard for the interests of the person to whom they are speaking.

Repetitive and characteristic behaviors
Many children with ASD engage in repetitive movements or unusual behaviors such as flapping their arms, rocking from side to side, or twirling. They may become preoccupied with parts of objects like the wheels on a toy truck. Children may also become obsessively interested in a particular topic such as airplanes or memorizing train schedules. Many people with ASD seem to thrive so much on routine that changes to the daily patterns of life — like an unexpected stop on the way home from school — can be very challenging. Some children may even get angry or have emotional outbursts, especially when placed in a new or overly stimulating environment.

What disorders are related to ASD?
Certain known genetic disorders are associated with an increased risk for autism, including Fragile X syndrome (which causes intellectual disability) and tuberous sclerosis (which causes benign tumors to grow in the brain and other vital organs) — each of which results from a mutation in a single, but different, gene. Recently, researchers have discovered other genetic mutations in children diagnosed with autism, including some that have not yet been designated as named syndromes. While each of these disorders is rare, in aggregate, they may account for 20 percent or more of all autism cases.

People with ASD also have a higher than average risk of having epilepsy. Children whose language skills regress early in life — before age 3 — appear to have a risk of developing epilepsy or seizure-like brain activity. About 20 to 30 percent of children with ASD develop epilepsy by the time they reach adulthood. Additionally, people with both ASD and intellectual disability have the greatest risk of developing seizure disorder.


How is ASD diagnosed?
ASD symptoms can vary greatly from person to person depending on the severity of the disorder. Symptoms may even go unrecognized for young children who have mild ASD or less debilitating handicaps.

Autism spectrum disorder is diagnosed by clinicians based on symptoms, signs, and testing according to the Diagnostic and Statistical Manual of Mental Disorders-V, a guide created by the American Psychiatric Association used to diagnose mental disorders. Children should be screened for developmental delays during periodic checkups and specifically for autism at 18- and 24-month well-child visits.

Very early indicators that require evaluation by an expert include:

no babbling or pointing by age 1
no single words by age 16 months or two-word phrases by age 2
no response to name
loss of language or social skills previously acquired
poor eye contact
excessive lining up of toys or objects
no smiling or social responsiveness
Later indicators include:

impaired ability to make friends with peers
impaired ability to initiate or sustain a conversation with others
absence or impairment of imaginative and social play
repetitive or unusual use of language
abnormally intense or focused interest
preoccupation with certain objects or subjects
inflexible adherence to specific routines or rituals
If screening instruments indicate the possibility of ASD, a more comprehensive evaluation is usually indicated. A comprehensive evaluation requires a multidisciplinary team, including a psychologist, neurologist, psychiatrist, speech therapist, and other professionals who diagnose and treat children with ASD. The team members will conduct a thorough neurological assessment and in-depth cognitive and language testing. Because hearing problems can cause behaviors that could be mistaken for ASD, children with delayed speech development should also have their hearing tested.


What causes ASD?
Scientists believe that both genetics and environment likely play a role in ASD. There is great concern that rates of autism have been increasing in recent decades without full explanation as to why. Researchers have identified a number of genes associated with the disorder. Imaging studies of people with ASD have found differences in the development of several regions of the brain. Studies suggest that ASD could be a result of disruptions in normal brain growth very early in development. These disruptions may be the result of defects in genes that control brain development and regulate how brain cells communicate with each other. Autism is more common in children born prematurely. Environmental factors may also play a role in gene function and development, but no specific environmental causes have yet been identified. The theory that parental practices are responsible for ASD has long been disproved. Multiple studies have shown that vaccination to prevent childhood infectious diseases does not increase the risk of autism in the population.


What role do genes play?
Twin and family studies strongly suggest that some people have a genetic predisposition to autism. Identical twin studies show that if one twin is affected, then the other will be affected between 36 to 95 percent of the time. There are a number of studies in progress to determine the specific genetic factors associated with the development of ASD. In families with one child with ASD, the risk of having a second child with the disorder also increases. Many of the genes found to be associated with autism are involved in the function of the chemical connections between brain neurons (synapses). Researchers are looking for clues about which genes contribute to increased susceptibility. In some cases, parents and other relatives of a child with ASD show mild impairments in social communication skills or engage in repetitive behaviors. Evidence also suggests that emotional disorders such as bipolar disorder and schizophrenia occur more frequently than average in the families of people with ASD.

In addition to genetic variations that are inherited and are present in nearly all of a person’s cells, recent research has also shown that de novo, or spontaneous, gene mutations can influence the risk of developing autism spectrum disorder. De novo mutations are changes in sequences of deoxyribonucleic acid or DNA, the hereditary material in humans, which can occur spontaneously in a parent’s sperm or egg cell or during fertilization. The mutation then occurs in each cell as the fertilized egg divides. These mutations may affect single genes or they may be changes called copy number variations, in which stretches of DNA containing multiple genes are deleted or duplicated. Recent studies have shown that people with ASD tend to have more copy number de novo gene mutations than those without the disorder, suggesting that for some the risk of developing ASD is not the result of mutations in individual genes but rather spontaneous coding mutations across many genes. De novo mutations may explain genetic disorders in which an affected child has the mutation in each cell but the parents do not and there is no family pattern to the disorder. Autism risk also increases in children born to older parents. There is still much research to be done to determine the potential role of environmental factors on spontaneous mutations and how that influences ASD risk.


Do symptoms of autism change over time?
For many children, symptoms improve with age and behavioral treatment. During adolescence, some children with ASD may become depressed or experience behavioral problems, and their treatment may need some modification as they transition to adulthood. People with ASD usually continue to need services and supports as they get older, but depending on severity of the disorder, people with ASD may be able to work successfully and live independently or within a supportive environment.


How is autism treated?
There is no cure for ASD. Therapies and behavioral interventions are designed to remedy specific symptoms and can substantially improve those symptoms. The ideal treatment plan coordinates therapies and interventions that meet the specific needs of the individual. Most health care professionals agree that the earlier the intervention, the better.

Educational/behavioral interventions: Early behavioral/educational interventions have been very successful in many children with ASD. In these interventions therapists use highly structured and intensive skill-oriented training sessions to help children develop social and language skills, such as applied behavioral analysis, which encourages positive behaviors and discourages negative ones. In addition, family counseling for the parents and siblings of children with ASD often helps families cope with the particular challenges of living with a child with ASD.

Medications: While medication can’t cure ASD or even treat its main symptoms, there are some that can help with related symptoms such as anxiety, depression, and obsessive-compulsive disorder. Antipsychotic medications are used to treat severe behavioral problems. Seizures can be treated with one or more anticonvulsant drugs. Medication used to treat people with attention deficit disorder can be used effectively to help decrease impulsivity and hyperactivity in people with ASD. Parents, caregivers, and people with autism should use caution before adopting any unproven treatments.

[Bakha]

Hey niggah
why you here posted my curriculum vitae?

[JamesBond007]

The Real Problems With Psychiatry

A psychotherapist contends that the DSM, psychiatry's "bible" that defines all mental illness, is not scientific but a product of unscrupulous politics and bureaucracy.

Hope Reese May 2, 2013

On May 22, the American Psychiatric Association will release the fifth Diagnostic and Statistical Manual of Mental Disorders, the DSM-5. It classifies psychiatric diagnoses and the criteria required to meet them. Gary Greenberg, one of the book's biggest critics, claims these disorders aren't real -- they're invented. Author of Manufacturing Depression: The Secret History of a Modern Disease and contributor to The New Yorker, Mother Jones, The New York Times and other publications, Greenberg is a practicing psychotherapist. The Book of Woe: The Making of the DSM-5 and the Unmaking of Psychiatry is his exposé of the business behind the creation of the new manual.

Can you talk about how the first DSM, published in 1952, was conceived?

One of the reasons was to count people. The first collections of diagnoses were called the "statistical manual," not the "diagnostic and statistical manual." There were also parochial reasons. As the rest of medicine became oriented toward diagnosing illnesses by seeking their causes in biochemistry, in the late 19th, early 20th century, the claim to authority of any medical specialty hinged on its ability to diagnose suffering. To say "okay, your sore throat and fever are strep throat." But psychiatry was unable to do that and was in danger of being discredited. As early as 1886, prominent psychiatrists worried that they would be left behind, or written out of the medical kingdom. For reasons not entirely clear, the government turned to the American Medico-Psychological Association, (later the American Psychiatric Association, or APA), to tell them how many mentally ill people were out there. The APA used it as an opportunity to establish its credibility.


How has the DSM evolved to become seen as the "authoritative medical guide to all of mental suffering"?

The credibility of psychiatry is tied to its nosology. What developed over time is the number of diagnoses, and, more importantly, the method by which diagnostic categories are established.

You're a practicing psychotherapist. Can you define "mental illness"?

No. Nobody can.

The DSM lists "disorders." How are disorders different from diseases or illnesses?

The difference between disease and disorder is an attempt on the part of psychiatry to evade the problem they're presented with. Disease is a kind of suffering that's caused by a bio-chemical pathology. Something that can be discovered and targeted with magic bullets. But in many cases our suffering can't be diagnosed that way. Psychiatry was in a crisis in the 1970s over questions like "what is a mental illness?" and "what mental illnesses exist?" One of the first things they did was try to finesse the problem that no mental illness met that definition of a disease. They had yet to identify what the pathogen was, what the disease process consisted of, and how to cure it. So they created a category called "disorder." It's a rhetorical device. It's saying "it's sort of like a disease," but not calling it a disease because all the other doctors will jump down their throats asking, "where's your blood test?" The reason there haven't been any sensible findings tying genetics or any kind of molecular biology to DSM categories is not only that our instruments are crude, but also that the DSM categories aren't real. It's like using a map of the moon to find your way around Russia.

So would you say that these terms -- disorder, disease, illness -- are just different names for the same concept?

I would. Psychiatrists wouldn't. Well, psychiatrists would say it sometimes but wouldn't say it other times. They will say it when it comes to claiming that they belong squarely in the field of medicine. But if you press them and ask if these disorders exist in the same way that cancer and diabetes exist, they'll say no. It's not that there are no biological correlates to any mental suffering -- of course there are. But the specificity and sensitivity that we require to distinguish pneumonia from lung cancer, even that kind of distinction, it just doesn't exist.

What are the most common misconceptions about the scientific nature of diseases such as depression?

I guarantee you that in the course of our conversation a doctor is telling a patient, "you have a chemical imbalance -- that's why you're depressed. Take Prozac." Despite the fact that every doctor who knows anything knows that there is no biochemical imbalance that causes depression, and most doctors understand that a diagnosis of depression doesn't really tell you anything other than what you already knew, that doesn't stop them from saying it.

Research on the brain is still in its infancy. Do you think we will ever know enough about the brain to prove that certain psychiatric diagnoses have a direct biological cause?

I'd be willing to bet everything that whenever it happens, whatever we find out about the brain and mental suffering is not going to map, at all, onto the DSM categories. Let's say we can elucidate the entire structure of a given kind of mental suffering. We're not going to be able to say, "here's Major Depressive Disorder, and here's what it looks like in the brain." If there's any success, it will involve a whole remapping of the terrain of mental disorders. And psychiatry may very likely take very small findings and trump them up into something they aren't. But the most honest outcome would be to go back to the old days and just look at symptoms. They might get good at elucidating the circuitry of fear or anxiety or these kinds of things.

What is the difference between a disorder and distress that is a normal occurrence in our lives?

That distinction is made by a clinician, whether it's a family doctor or a psychiatrist or whoever. But nobody knows exactly how to make that determination. There are no established thresholds. Even if you could imagine how that would work, it would have to be a subjective analysis of the extent to which the person's functioning is impaired. How are you going to measure that? Doctors are supposed to measure "clinical significance." What's that? For many people, the fact that someone shows up in their office is clinical significance. I'm not going to say that's wrong, but it's not scientific. And there's a conflict of interest -- if I don't determine clinical significance, I don't get paid.

You say one of the issues with taking these categories too seriously is that it eliminates the moral aspect behind certain behaviors.

It's our characteristic way of chalking up what we think is "evil" to what we think of as mental disease. Our gut reaction is always "that was really sick. Those guys in Boston -- they were really sick." But how do we know? Unless you decide in advance that anybody who does anything heinous is sick. This society is very wary of using the term "evil." But I firmly believe there is such a thing as evil. It's circular -- thinking that anybody who commits suicide is depressed; anybody who goes into a school with a loaded gun and shoots people must have a mental illness. There's a certain kind of comfort in that, but there's no indication for it, particularly because we don't know what mental illness is.

How do diagnoses affect people?

One of the overlooked ways is that diagnoses can change people's lives for the better. Asperger's Syndrome is probably the most successful psychiatric disorder ever in this respect. It created a community. It gave people whose primary symptom was isolation a way to belong and provided resources to those who were diagnosed. It can also have bad effects. A depression diagnosis gives people an identity formed around having a disease that we know doesn't exist, and how that can divert resources from where they might be needed. Imagine how much less depression there would be if people weren't worried about tuition, health care, and retirement. Those are all things that aren't provided by Prozac.

What are the dangers of over-diagnosing a population? Are false positives worse than false negatives?

I believe that false positives, people who are diagnosed because there's a diagnosis for them and they show up in a doctor's office, is a much bigger problem. It changes people's identities, it encourages the use of drugs whose side effects and long-term effects are unknown, and main effects are poorly understood.

In 1850, doctor Samuel Cartwright invented "drapetomania" -- a disease causing slaves to run away. How do social and historical context affect our understanding of mental illness?

Cartwright was a slaveholder's doctor from New Orleans -- he believed in the inferiority of what he called the "African races." He believed that abolitionism was based on a misguided notion that black people and white people were essentially equal. He thought that the desire for freedom in a black person was pathological because black people were born to be enslaved. To aspire to freedom was a betrayal of their nature, a disease. He invented "drapetomania," the impulse to run away from slavery. Assuming there wasn't horrible cruelty being inflicted on the slaves, they were "sick." He came up with a few diagnostic criteria and presented it to his colleagues.

So we corrected our notion of what counts as a "disease." Is there a modern equivalent?

Homosexuality is the most obvious example. Until 1973, it was listed as a disease. It's very easy to see what's wrong with "drapetomania," but it's easier to see the balancing act involved in saying homosexuality is or isn't a disease -- how something has to shift in society. The people who called homosexuality a disease weren't necessarily bigots or homophobes -- they were just trying to understand people who wanted to love people of their own sex. Disease is a way to understand difference that includes compassion. What has to shift is the idea that same-sex love is acceptable. Once that idea is there, it doesn't make sense to call homosexuality a disease.

Who was involved in the creation of the DSM-5?

The American Psychiatric Association owns the DSM. They aren't only responsible for it: they own it, sell it, and license it. The DSM is created by a group of committees. It's a bureaucratic process. In place of scientific findings, the DSM uses expert consensus to determine what mental disorders exist and how you can recognize them. Disorders come into the book the same way a law becomes part of the book of statutes. People suggest it, discuss it, and vote on it. Homosexuality was deleted from the DSM by a referendum. A straight up vote: yes or no. It's not always that explicit, and the votes are not public. In the case of the DSM-5, committee members were forbidden to talk about it, so we'll never really know what the deliberations were. They all signed non-disclosure agreements.

What are the important changes made in the new DSM, and how will they affect patients?

It's going to cause a lot of trouble when Asperger's Syndrome disappears. It may cause some trouble when the bereavement exclusion disappears. That's a good example of why the APA's going to be in trouble. It was so unnecessary, so stupid. They've made the absurd statement that they know the difference, two weeks after someone's wife dies, whether that person is "depressed," or just "in mourning." Come on! Who are these guys?

The APA released a series of drafts of the DSM-5 before publication. Why?

They solicited public input, to their great credit. But they never said what they were doing with it. They said "we got this number of responses" but not what the responses were. How they influenced the process, if at all. The other problem with the drafts is that they deleted them. The history of how these things developed will be difficult to trace unless you happened to make copies of the website, which was in explicit violation of the APA's copyright. They also tried to prevent people from using the draft criteria in any kind of academic paper -- an unprecedented move. They demanded that anybody who wanted to use the criteria would have to seek and obtain their permission for academic publication. Nobody's ever done that. There were a couple of high profile, embarrassing studies that were conducted with the draft criteria, and once that happened, the APA asserted copyright over the draft criteria.

The APA considers the DSM-5 a "living document." What do you think they mean by this?

It's one of those rhetorical flourishes that, if you dig into it, you realize is a real problem. There's a difference between a constitution and a book of medical diagnoses. It's not entirely clear what they mean by "living document," but it appears that they want to update as evidence comes in. That's not a bad idea -- they don't want to go through one of these massive, expensive, embarrassing overhauls of the diagnostic manual every five or ten or fifteen years, they want to update as they go. But in the meantime, people are getting diagnosed, drugs are getting developed and prescribed, research is being done, and nobody knows to what extent things will get revised as time goes on. The APA is trying to say it's always in flux. But if that's the case, why should we let it have so much power?

Can you talk about that? What does the DSM has power over?

To get an indication from the FDA, a drug company has to tie its drug to a DSM disorder. You can't just develop a drug for anxiety. You have to develop the drug for Generalized Anxiety Disorder or Major Depressive Disorder. You can't just ask for special services for a student who is awkward. You have to get special services for a student with autism. In court, mental illnesses come from the DSM. If you want insurance to pay for your therapy, you have to be diagnosed with a mental illness. Whatever future contact you have with the health care system will be affected by the fact that a mental illness is in your dossier. If you call it a living document, what happens to all the people who are diagnosed with Asperger's when that's thrown out? Will it be chaotic? Maybe.

Al Frances chaired the task force for the DSM-IV and has become one of the biggest critics of the DSM-5. What do you think of his arguments?

We agree that the DSM does not capture real illnesses, that it's a set of constructs. We disagree over what that means. He believes that that doesn't matter to the overall enterprise of psychiatry and its authority to diagnose and treat our mental illnesses. I believe it constitutes a flaw at the foundation of psychiatry. If they don't have real diseases, they don't belong in real medicine. Al's attack is overdone. I think he's really trying to keep scrutiny off of the whole DSM enterprise. That's why he's been so adamant that you don't throw the baby out with the bathwater -- he believes that the DSM-IV, for all of its flaws, its still worthwhile. I disagree.

Frances also worries that your criticisms are anti-psychiatry.

It's the universal paranoia of psychiatry that everybody who disagrees with them is pathological. You can't disagree with a psychiatrist without getting a diagnosis. I've been writing critically about psychiatry for ten years and I've always encountered that. Psychiatry is a defensive profession. They have a lot to protect and they know their weakness. To repel criticism in the strongest way possible, from their point of view, you diagnose the critic.

Can you talk about the intersection between psychiatry and psychology? How does the DSM relate to both fields?

Psychiatry's in charge of the DSM. Psychologists and other mental health professionals use the DSM. But psychiatrists have the power and money. I'm critical of the mental health professions in general, including my own practice. But the APA has appropriated this business to themselves. They guard it jealousy, they protect it with ruthless tactics, and yes, they take a disproportionate amount of the heat for this thing, but it's their baby. They make hundreds of millions of dollars off of this deal.


Will the APA lose credibility?

Of course it will. The DSM-5 will come out on May 22 and people will take their pot shots at it -- like shooting fish in a barrel. I had to be convinced to write this book, though. How hard is it to criticize an organization that seriously thinks that it's okay to call "Internet Use Disorder" a mental illness? They're going to take shot after shot. And the response will be ineffectual and weak. They'll bob and weave, talk about the "living document," and unleash their line of bullshit.

Is there a solution?

The solution is to take the thing away from them. The APA owns these diagnoses. I didn't ask permission because I don't care -- let them sue me. But if anyone wants to put diagnostic criteria into this book, they have to pay the APA. That's absurd. And if you add the vacuousness of the document and the incompetence with which the revision was carried out -- take the damn thing away from them.

https://www.theatlantic.com/health/a...hiatry/275371/

[Moje ime]

https://www.theapricity.com/forum/sh...27-Autism-Test

[Ymyyakhtakh]

Environmental factors may also play a role in gene function and development, but no specific environmental causes have yet been identified.

What about glyphosate, exposure to microwave radiation from wireless communications, or living near an airport? Or what about prenatal exposure to valproate?

The theory that parental practices are responsible for ASD has long been disproved. Multiple studies have shown that vaccination to prevent childhood infectious diseases does not increase the risk of autism in the population.

medication can’t cure ASD or even treat its main symptoms

Except GcMAF or sulforaphane.

https://www.youtube.com/watch?v=YBuXiIF1QEc Glyphosate and Autism: an Indisputable Link and a Path Towards Healing - Stephanie Seneff, PhD
https://www.youtube.com/watch?v=yydZZanRJ50 The Autism Epidemic Is Caused by EMFs, Acting via Calcium Channels and Chemicals Acting via NMDA-Rs
https://www.youtube.com/watch?v=ABRFesh5qm8 Dr. Andrew Moulden talk on Vaccine Injuries
https://www.youtube.com/watch?v=RwJNp_qhTU8 Retroviruses, prions & the synergy of mercury, lead, aluminum and agrochemicals - Dietrich Klinghardt
https://www.youtube.com/watch?v=cdk6cZtLXyY Chronic Co-Infections in Autism Spectrum Disorders - Professor Garth Nicholson
https://www.youtube.com/watch?v=svPjCd7D0tA Robert F Kennedy Jr - Thimerosal: Let the Science Speak (AutismOne Keynote)
https://www.youtube.com/watch?v=sT25HhAVhhU Dr. Garth Nicolson - Weaponized Mycoplasmas
https://www.youtube.com/watch?v=Jxb1gly5fq4 Advances in Understanding Immune Dysfunction in Autism Spectrum Disorders - Dr Judy Mikovits
https://www.youtube.com/watch?v=VA0w4R8s9Ug Christopher Shade - AutismOne
https://www.youtube.com/watch?v=S39kmstBNkk Mercury, Autism & the Global Vaccine Agenda - Dr. David Ayoub Lecture
https://www.youtube.com/watch?v=8BrDf486YFc Dr Ruggiero - Autism International Conference - January 2018

This stuff is gonna get purged from JewTube next.

[MustafaTekin]

source: https://www.ninds.nih.gov/Disorders/...der-Fact-Sheet

[MustafaTekin]

'All my life suddenly made sense': how it feels to be diagnosed with autism late in life
Jon Adams was 52 when he learned he had Asperger syndrome. As adult referrals rise, he and others explain the impact – good and bad – of a late diagnosis

Jon Adams was 52 when he learned he had Asperger syndrome. As adult referrals rise, he and others explain the impact – good and bad – of a late diagnosis

Jon Adams has known that he has Asperger syndrome since April 2013.
Jon Adams has known that he has Asperger syndrome since April 2013. Photograph: Rosie Barnes
One day during his last year at primary school, Jon Adams drew a picture of a street in Portsmouth, the city where he still lives. The scene he drew had no people in it, but its representation of everything else suggested a talent beyond his years.

The headteacher happened to see the picture, and said he wanted to put it up in the school’s entrance hall. “And that was an honour,” Adams says, “particularly for someone who didn’t think they were any good, because they’d been told they weren’t any good, every day.”

Adams was asked to write his name on the back, an instruction that threw up a choice. He had difficulties with writing, and he knew his class teacher could be cruel. “If I asked for help, I knew what he would say: ‘Oh, he can’t even spell his own name, what rubbish is that?’ So I did it myself.”


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The teacher called Adams to the front of the class. “I went up, gave it to him, he held it up in front of the class, and then he tore it up. He said, ‘He’s spelled his name wrong – he’ll never be anything.’”

This happened 45 years ago. In recent years, Adams has been treated for post-traumatic stress disorder, caused at least partly by that episode, and how long it lived on, not just in his memory, but in his understanding of the world and his place in it. The story says a lot about the inhumanity that was once rife in the British education system; but it also shines light on what it’s like spending a lot of your life being not just misunderstood, but routinely insulted. “Someone telling you you’re no good every day worms its way inside your head,” Adams says. “Inside, you know you’re all right, so there’s this conflict going on.”

Since April 2013, Adams has known that he has Asperger syndrome – or, to put it another way, that he is autistic. Ten minutes online will tell you that Adams’ condition comes down to a so-called “triad of impairments” to do with social interaction, communication and imagination, or what some people call “flexibility of thought” – although the fact that Adams is a prolific artist suggests that, in his case, that last criterion might be misplaced.

Since 2013, many diagnoses of autism have also included a range of sensory issues, among them aversions to certain textures, sounds, smells and tastes, as well as a deep dislike of sudden noise. In Adams’ case, these seem to blur into a complex kind of synaesthesia: he understands music as something he can touch, and experiences the colour yellow as a profoundly unpleasant taste, like mould.

Adams sometimes talks about his condition in front of an audience, and there is one question that always comes up. “It goes: ‘My son’s eight, he sits in his room all day, he does Lego, he does complicated drawings, he won’t talk to anyone else – how do I make him socialise?’ Well, you don’t. He’s made his world. One day, he’ll show it to you. Don’t let him grow up thinking that the way he’s thinking and what he’s doing are faulty.”

***

Jon Adams was formally diagnosed at the age of 52, at an NHS clinic run as an offshoot of Cambridge University’s Autism Research Centre, after he was referred there by his GP. The initial spark had been a meeting with the centre’s founder and director, Simon Baron-Cohen (the cousin, in case anyone was wondering, of Sacha), who had spoken with Adams at the Cheltenham literature festival.

Adams had begun to realise what sat under a lot of his experiences; at the time, the biography that accompanied his work as an artist included the words “probably autistic”. From May 2012 until June 2013, he worked as the research centre’s artist-in-residence; immediately afterwards, a specialist gave him his formal diagnosis, a process that involved an interview and something akin to a questionnaire. “I got the letter through, saying I scored 18 out of 18 autistic traits, and I had Asperger’s,” Adams says.

I meet Baron-Cohen in a crowded Starbucks near St Paul’s Cathedral in London, where he wryly comments on the mixture of chatter, clattering cups and muzak – “For a lot of autistic people, this would probably be hell” – and casts his mind back over the 35 years he has been thinking about and researching autism. He started working with six autistic children in a special unit in Barnet, north London, in 1982. Fifteen years later, he set up the Cambridge research centre; two years after that, in 1999, he opened a clinic dedicated to diagnosing autistic adults.

My son received a diagnosis aged three. He had fixations with particular music or places – traits I recognise in myself
“There was a growing awareness that autism wasn’t just about kids,” he tells me. “I was receiving more and more emails saying, ‘My son’s an adult, but he’s never fitted in. Might he have autism?’ An adult couldn’t go to a child and adolescent clinic, so where were they meant to go? If they went to a learning disability clinic, and they had an IQ above 70, they’d be turned away. So these people were like a lost generation. That was a phrase I used a lot.”

The National Autistic Society estimates that there are currently around 700,000 people living with autism in the UK – more than one in every 100 of the population. Some of these people have learning disabilities. Some are what the medical vocabulary terms “non-verbal”, or unable to speak. Others are so-called “high-functioning”, a sub-group that includes those with Asperger syndrome, the condition named after the Austrian paediatrician who in the 1940s worked with a group of children he famously termed “little professors”. Asperger syndrome is distinguished by the fact that people who have it display no language delay as toddlers or small children. (Asperger died in 1980, long before the term “Asperger syndrome” entered popular usage. It has since been dropped from the relevant American diagnostic manual, but is still used in the UK.)

It is among this latter group that you will find many of the 20% of autistic people currently thought to have been diagnosed as adults. No national figures for adult autism diagnoses are available, but anecdotal evidence suggests numbers are rising: Baron-Cohen tells me that four years ago, 100 cases in Cambridgeshire were referred to his clinic; in the first four months of 2016 alone, it received 400 referrals.

Most of the terms used to describe autism don’t do justice to the nuanced, complicated traits bound up with it. Nonetheless, all its variants are covered by the catch-all term autism spectrum disorder, or ASD; people who dispute that autism is any kind of “disorder” prefer the term autism spectrum condition. The word “spectrum” was first used in this context by the pioneering British researcher Lorna Wing, who died in 2014. Baron-Cohen explains: “What she meant at the time, I think, was a spectrum within those who come to clinical attention. Where it’s gone since is that this spectrum runs right through society, out into the general population.”

My own interest in autism began when my son James received a diagnosis of ASD at the age of three. Back then, some things seemed strange: the social distance between him and his peers; his fixations with particular music (the Clash, the Beatles) or places; his pointed dislike of some foods or sounds (I still curse whoever invented the public toilet hand-dryer); his amazing facility with technology. Now, these things are simply part of the fabric of our shared life. I recognise echoes of myself in some of these traits (the music, the technology), and of plenty of other people: more than anything, his 10 years have brought me an ever-growing understanding of the complexities of human psychology, both among those diagnosed as “on the spectrum” and so-called “neurotypical” people.

Unfortunately, the everyday world has yet to catch up. Only 16% of adults diagnosed with autism in the UK are in full-time, paid employment. In 2014 Baron-Cohen’s team found that two-thirds of the patients in their clinic had either felt suicidal or planned to kill themselves, and that a third had attempted to do so. “To my mind, this is nothing to do with autism or Asperger syndrome,” he says. “These are secondary mental-health problems. You came into the world with autism, and the way the world reacted, or didn’t react, to you has led to a second problem, which is depression. And that’s preventable.”

full text: https://www.theguardian.com/society/...me-john-harris