Autism Diagnosis Quotes

Autism, is part of my child, it's not everything he is. My child is so much more than a diagnosis.

Label-locked thinking can affect treatment. For instance, I heard a doctor say about a kid with gastrointestinal issues, “Oh, he has autism. That’s the problem”—and then he didn’t treat the GI problem.

A speech-language pathologist named Michelle Garcia Winner told me that many parents in her practice became aware of their own autistic traits only in the wake of their child’s diagnosis.

There's a famous expression that if you've met one person with autism, then... you've met one person with autism. So you met me. Just me. Not a diagnosis. I realize I hurt you. I forgot to think about you first. I did not put myself in your shoes, as the expression goes. (Though as a sidebar, I think wearing other people's shoes is kind of disgusting; I'm only okay with the concept metaphorically.) So you know, you are all I think about.

Autism was, and would long remain, a diagnosis in the eye of the beholder.

Diagnosis (of autism) is such a clinical word to describe a moment in which your humanity is so deeply affirmed, understood, and valued.

The diagnosis of autism can sometimes help you better predict a child’s behaviors, but it tells you nothing about their specific way of thinking, their idiosyncrasies, their strengths, or their individual personality.

Bizarrely, my biggest fear was that the tests would prove I didn’t have Asperger’s or that the psychologist would think I wasn’t autistic enough to merit a diagnosis. Then I’d be back to having no explanation for all the atypical things about me.

While a 2013 study found that, over time, a very small percentage of children experienced such improvements in symptoms that they no longer fit the DSM autism diagnosis, the study found no way to predict which children would show such gains, or why.

I was tiny, with no idea of why, or how, or even where I was on fire all of the time. "You're not on fire!" people metaphorically told me. "We're all on fire! Everyone feels this way." But they were wrong.

I was, however, a handful. I was overly smart, easily bored, very curious and constantly in motion. Consequently, I got a lot of guidance from adults on how to behave properly. This reined in my more problematic behaviors, but it also made me feel like I was forever in danger of doing something “wrong,” especially when I “wasn’t trying hard enough.

Finally, at age seventy, Goodman was able to get the diagnosis and access to services he needed. Joining a support group for adults run by the Asperger’s Association of New England, he says, was “like coming ashore after a life of bobbing up and down in a sea that seemed to stretch to infinity in all directions.

A diagnosis is not a prediction. It doesn’t tell you what’s possible. It doesn’t change you, your colleague, your child, or your friend. It just opens up tricks and tools to thrive.

It is no wonder that I had tears of relief, to find out, finally, the truth - to discover an explanation, a diagnosis that explained not one or two of my symptoms or behaviours but ALL of them. Finally, someone saw me

The label neurodiverse includes everyone from people with ADHD, to Down Syndrome, to Obsessive-Compulsive Disorder, to Borderline Personality Disorder. It also includes people with brain injuries or strokes, people who have been labeled “low intelligence,” and people who lack any formal diagnosis, but have been pathologized as “crazy” or “incompetent” throughout their lives. As Singer rightly observed, neurodiversity isn’t actually about having a specific, catalogued “defect” that the psychiatric establishment has an explanation for. It’s about being different in a way others struggle to understand or refuse to accept.

Go to every IEP with a plan of your own. Be the expert. Teachers and therapists know general information only. You, on the other-hand, know the specifics about your child – you are your child’s only real expert. Pop in unexpectedly to observe. Keep educators on their toes. Be kind and push gently. If needed, push hard.

And then panic set in. My brain started to ping-pong unintelligible thoughts. Pictures and garbled jargon held a few slivers of phrases and images that were almost recognizable, but nothing coherent stuck together. My mind got louder, bolder, more intense, more pressurized. I couldn't explain my thoughts, or my feelings, or what I needed or wanted right then and there to let the pressure go. I just wanted to settle. I just wanted someone to take care of me. I just wanted to settle.

Sometimes all a parent needs is to know the impossible is actually possible. Hope goes a long way when it comes to autism. Matt gives people hope.

Know your own child’s behaviors and look deeper to find their meaning. Be the expert for your child. Discover the wonderful.

A small step forward . . .every . . single . . .day. The sun is coming up and I am wondering, 'What wondrous thing shall I witness today?

Do you have uneven sets of skills? (e.g., you can comfortably speak in front of a large group at work but are unable to speak to a small group of strangers at a party?

Indeed, courage is not the absence of fear but the ability to feel the fear without letting it stop you from doing what you want.

On the one hand, I was happy to have a proper diagnosis. Aside from a trust fund and a royal title, that was really the only thing I'd ever wanted in life. On the other hand, I was offended to learn that my brain was defective. Or, I suppose I should say, "differently abled." One thing I was not was surprised. Four generations of manic depression on my mother's side of the family. Three of autism on my father's side. Drug addict uncles, a pyromaniac cousin, a couple of schizophrenics and suicides, several flesh-and-blood geniuses, and a pecan farmer. You just cannot mix those raw ingredients together and then stick them inside my mother for nine months and expect something normal to come out. It's a wonder I wasn't born with a set of horns.

auditory processing issues: difficulty understanding spoken language, often experienced as a delay between hearing spoken words and being able to process those audio sounds into recognizable words .

Even if I had had a diagnosis growing up, this would still have been the case because this is still the perspective people often take today when they say, “Being Autistic is no excuse for being rude, raw or too honest.

He acknowledged that being an autistic adult doesn’t necessarily mean not attending your cousin’s baby shower; it can mean going to the baby shower and spending a good part of the afternoon hiding out in the kitchen (one of

felt like I was somehow mothering my younger self—revisiting each moment, looking at it in a new light and telling that younger version of me that it wasn’t my fault, that I’d done the best I could, that to expect more from me in the absence of support would have been unreasonable.

projections a lot of what people say is a projection of themselves. sometimes, when you're clinging to hope and someone says to you, "but everyone feels this way..." it's because they feel that way. it also means that somewhere, somehow, someone told them that they shouldn't complain either.

process of giving meaning to experiences is sometimes known as sensemaking or creating a sensemaking narrative. It happens when our current way of understanding ourselves or our situation is inadequate. Without the Asperger’s piece of the puzzle, I was forced to cobble together incomplete explanations for my developmental history and my life experiences.

After discovering that he and his sons were on the spectrum, Hedin joined the Global and Regional Asperger Syndrome Partnership (GRASP), one of the largest support groups for people with autism in the United States. Looking back, he feels certain that a number of hams he knew in the course of fifty-five years of surfing the airwaves would have qualified for a diagnosis.

I do believe that we (autistic individuals such as myself) are very susceptible to suicidal thinking for multiple reasons that include: chronic high levels of anxiety, tendency to fixate on or get stuck on negative disturbing thoughts, low self-worth, inability to have significant or intimate relationships with others, replaying over and over again negative statements that others have said to us, feeling unable to be understood, lack [of] a solid self-identity, difficulty with expressing self to others, feelings of great isolation, feeling that you are or may be a burden to others, feeling unable to contribute to society or the greater good, etc […] I do believe that the most important thing that someone else can do for a struggling autistic individual is to affirm their self-worth, recognise and validate their struggles and affirm the things that they do that are greatly valued by others. The worst thing to do for an autistic individual, or any struggling individual for that matter, is to not believe them or to deny the validity of their struggles. My greatest and deepest hurt is that doctors, family members and important others did not believe me in my struggles, particularly when I was younger, before my diagnosis at the age of 35 years. This has been the strongest impetus for my feelings of unworthiness and suicidal thoughts. (Woman with autism)

While many autistic people face great challenges as children, things become even harder once they reach adulthood. Suddenly, society expects you to be “an adult” and behave and function as such. It is such a shame that exactly at the point in their lives when they need it the most, the support they receive from organizations and resources often stops. Because I was diagnosed at 21, I never received any support as a child. After I received my diagnosis, my mother tried to find all kinds of resources, but she soon realized that I was too old for much of anything.

For a while, every smart and shy eccentric from Bobby Fischer to Bill Gate was hastily fitted with this label, and many were more or less believably retrofitted, including Isaac Newton, Edgar Allen Pie, Michelangelo, and Virginia Woolf. Newton had great trouble forming friendships and probably remained celibate. In Poe's poem Alone, he wrote that "All I lov'd - I lov'd alone." Michelangelo is said to have written "I have no friends of any sort and I don't want any." Woolf killed herself. Asperger's disorder, once considered a sub-type of autism, was named after the Austrian pediatrician Hans Asperger, a pioneer, in the 1940s, in identifying and describing autism. Unlike other early researchers, according to the neurologist and author Oliver Sacks, Asperger felt that autistic people could have beneficial talents, especially what he called a "particular originality of thought" that was often beautiful and pure, unfiltered by culture of discretion, unafraid to grasp at extremely unconventional ideas. Nearly every autistic person that Sacks observed appeard happiest when alone. The word "autism" is derived from autos, the Greek word for "self." "The cure for Asperger's syndrome is very simple," wrote Tony Attwood, a psychologist and Asperger's expert who lives in Australia. The solution is to leave the person alone. "You cannot have a social deficit when you are alone. You cannot have a communication problem when you are alone. All the diagnostic criteria dissolve in solitude." Officially, Asperger's disorder no longer exists as a diagnostic category. The diagnosis, having been inconsistently applied, was replaced, with clarified criteria, in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders; Asperger's is now grouped under the umbrella term Autism Spectrum Disorder, or ASD.

Campaign to destigmatize so-called "mental illness" often take a wrong turning here. They try to demonstrate how suffers of some condition have made amazing contributions to the science or the arts. Trying to destigmatize the diagnosis of autism, for example, we read how Einstein and Newton would have received that diagnosis today, and yet made fabulous discoveries in the field of physics. Even if they are acknowledged to have been "different", their worth is still reckoned in terms of how their work has impacted on the world of others. However well-intentioned, such perspectives are hardly judicious, as they make an implicit equation between value and social utility. Taking this step is dangerous, as the moment that human life is defined in terms of utility, the door to stigmatization and segregation is opened. If someone was found to be not useful, what value, then, would their life have? This was in fact exactly the argument of the early-twentieth-century eugenicists who complained for the extermination of the mentally ill. Although no one would admit such aspirations today, we cannot ignore the resurfacing in recent years of a remarkably similar discourse, with its emphasis on social utility, hereditary and genetic vulnerability.

In an effort to add detail to my blueprint for life, I have begun contacting a number of autism experts, including Professor Tony Attwood, author of The Complete Guide to Asperger’s Syndrome. He stressed that with autism the core features are generally the same for boys and girls, men and women. There are, however, key differences. He told me, “One is how girls react to being different. The other is the different expectations in society for girls. “In terms of how girls react, I think one of the common ways is to observe, analyze, and imitate and create a mask, which delays diagnosis for decades until the wheels fall off.

I know so many Autistic people for whom their diagnosis or self-realization was a clarifying and affirming moment. After the initial shock and shame passes, coming into a neurodiverse identity can prompt you to reexamine your entire life, and all your old values, allowing you to build something slower, more peaceful, and more beautiful. But it’s not only Autistics who benefit from embracing neurodiversity in that way. We all deserve to take a step back and ask whether our lives line up with our values, whether the work we do and the face we show to others reflects our genuine self, and if not, what we might want to change.

Simply put, within AS, there is a wide range of function. In truth, many AS people will never receive a diagnosis. They will continue to live with other labels or no label at all. At their best, they will be the eccentrics who wow us with their unusual habits and stream-of-consciousness creativity, the inventors who give us wonderfully unique gadgets that whiz and whirl and make our life surprisingly more manageable, the geniuses who discover new mathematical equations, the great musicians and writers and artists who enliven our lives. At their most neutral, they will be the loners who never now quite how to greet us, the aloof who aren't sure they want to greet us, the collectors who know everyone at the flea market by name and date of birth, the non-conformists who cover their cars in bumper stickers, a few of the professors everyone has in college. At their most noticeable, they will be the lost souls who invade our personal space, the regulars at every diner who carry on complete conversations with the group ten tables away, the people who sound suspiciously like robots, the characters who insist they wear the same socks and eat the same breakfast day in and day out, the people who never quite find their way but never quite lose it either.

In the first sixteen years of my life, my parents took me to at least a dozen so called professionals. Not one of them ever came close to figuring out wheat was wrong with me. In their defense, I will concede that Asperger's did not yet exist as a diagnosis, but autism did, and no one ever mentioned I might have any kind of autistic spectrum disorder. Autism was viewed by many as a much more extreme condition - one where kids never talked and could not take care of themselves. Rather than take a close sympathetic look at me, it proved easier and less controversial for the professionals to say I was just lazy, or angry, or defiant. But none of those words led to a solution to my problem.

Let’s explore some key signs you should be watchful for: Unrelenting fatigue: Persistent exhaustion, even after adequate rest and sleep, is a key part of Autistic burnout. When grappling with burnout, your body may feel utterly exhausted, leaving you scrambling for energy to complete even the simplest tasks. Heightened sensory sensitivities: Sensitivity to sensory stimuli—be it noise, light, texture, or smell—intensifies during burnout, amplifying your susceptibility to sensory overload, meltdowns, and shutdowns. Sensory stimuli that used to feel manageable may now feel overwhelming. Skills and functioning decline: A conspicuous drop in skills like focusing, organizing, problem-solving, and speaking is another feature of burnout and makes social interactions more daunting. Emotional dysregulation: Burnout-induced dysregulation in your nervous and sensory systems hampers your ability to manage your emotions, resulting in intense emotions or emotional numbness. Increased anxiety, irritability, or feelings of being overwhelmed are common during burnout. Diminished tolerance for change: During burnout, your capacity to absorb and adapt to change wanes, and you may seek comfort in sameness and predictability. You might experience heightened distress in the face of the unexpected. Social isolation: Burnout can spark a retreat into solitude and diminish your ability to engage socially. You might withdraw from social interactions and lose motivation for once-enjoyed hobbies or activities. Masking: Burnout can throw a wrench in your masking abilities, and it can be confusing if you don’t understand what is happening! Interestingly, lots of adults don’t get their autism diagnosis until they are in burnout and have lost their ability to mask.

Women receiving late diagnosis often share the same sense of relief and self-acceptance as men, but perhaps to an even greater degree, due to the way in which they have needed to manage their autism – often through bending to fit to what’s expected of them in terms of gender expectations through camouflaging (which autistic men are seen as less prone to and/or able to do). Feeling justified or vindicated by diagnosis is the strong response of many of the women I have spoken to: a sense of having the right to be yourself established – for the first time – in a world that doesn’t always welcome or appreciate that self. These are women who are exhausted and angry at having tried so hard to make everything make sense, while presuming that they were to blame for not getting it in the first place: women who feel they have had to put on a persona of social acceptability in order to be tolerated.

I believe that disclosure represents a particular kind of inventional site within autism land. Because autism, in the cultural imagination, is an ambiguous and often mystery-laden construct, any disclosure around autism invokes questions, invokes guesswork, incites demands for particularity. One cannot claim autism without being pressed for more -- more information, more cross-examination, more refutation, more response, more words flowing from more mouths. But there is likewise a problem of ethos (or kakoethos, to quote Jenell Johnson) inherent in these disclosures, wherein autistic people are figured as lacking authority to speak on or from within autism. Autistic academic Dinah Murray laments these figurations of autism and ethos, noting, "Disclosure of an autism spectrum diagnosis means disclosure of the fundamentally flawed personhood implied by [autism's] diagnostic criteria. It is likely to precipitate a negative judgment of capacity involving permanent loss of credibility." In disclosing autism, we are both too autistic and not autistic enough...

Although there are no set methods to test for psychiatric disorders like psychopathy, we can determine some facets of a patient’s mental state by studying his brain with imaging techniques like PET (positron emission tomography) and fMRI (functional magnetic resonance imaging) scanning, as well as genetics, behavioral and psychometric testing, and other pieces of information gathered from a full medical and psychiatric workup. Taken together, these tests can reveal symptoms that might indicate a psychiatric disorder. Since psychiatric disorders are often characterized by more than one symptom, a patient will be diagnosed based on the number and severity of various symptoms. For most disorders, a diagnosis is also classified on a sliding scale—more often called a spectrum—that indicates whether the patient’s case is mild, moderate, or severe. The most common spectrum associated with such disorders is the autism spectrum. At the low end are delayed language learning and narrow interests, and at the high end are strongly repetitive behaviors and an inability to communicate.

20 years, we have experienced three unanticipated fads partly precipitated by DSM-IV: a 20-fold increase in Autism Spectrum Disorder,7 a tripling of Attention-Deficit/Hyperactivity Disorder (ADHD),8 and a doubling of Bipolar Disorders.9 The most dangerous fad is a 40-fold increase in childhood Bipolar Disorders,10 stimulated, not by DSM-IV, but instead by reckless and misleading drug company marketing. Twenty percent of the U.S. population11 is taking a psychotropic drug; 7% is addicted to one; and overdoses with legal drugs now cause more emergency room visits than overdoses with illegal drugs.

Teaching moments. . . never let one pass you by. And confidence-building. Give him the tools and watch him take the reigns.

It is easier to say that AS best describes my differences. It makes people more comfortable to have a scientific-sounding term. But actually, I feel dishonest when I say I have AS because the negative effects of my differences on my life are so slight compared to other kids who have AS or other forms of autism and truly suffer. I always feel like I'm doing the people who have these conditions a disservice when I use the medical term, because then people say, "Oh, that doesn't seem so bad. What's all the fuss about?

Lesson for today..... just because an autistic child seems intensely focused on numbers, facts and history, does NOT mean they don't feel for the people involved. Difficulty expressing emotion is not the same as an inability to empathize.

My son regressed. I have my own thoughts on that, just as all parents do. It doesn't mean that I would ever think of another parent as ignorant or stupid if they think differently about their own child. If we are to be a community, then we need to be heard as a community and not as warring factions. Support each other.

While medicine and psychiatry elsewhere in the world in this era shared characteristics, the Reich’s diagnosis regime operated under the shadow of death, and it included death as a treatment option.

A study in Japan found that rates of autism diagnosis continued to rise steeply even after the combination MMR was replaced by single vaccines. Another study in Hong Kong found that mercury levels in the bloodstreams of kids with autism were not significantly higher than those in typical children.

I have always had the same hopes and dreams as others. It just may not have been obvious.

Until this point in history, it was advantageous for a person to claim to be autistic when one really wasn't autistic at all, because society was more than willing to cut people with autism slack, or make special accommodations for them. But as people's medical privacy continues to erode, and as national healthcare systems continue to be modified, as the US one is currently, it will be much harder for self-diagnosed people, wannabees, and diagnosis shoppers to claim to be autistic when the government will be scrutinizing everyone so closely. So

Alternatively, diagnosed autistics, self-diagnosed people, people in the process of getting a diagnosis, people seeking a diagnosis, wannabees, or misdiagnosed individuals will sometimes call themselves low-functioning when they aren't. What they may be instead is lazy, and they may use their diagnosis or their alleged diagnosis to obtain special privileges throughout life, such as:   ◦         An IEP (Individualized Educational Program) in school ◦         Subsidized housing ◦         Work accommodations they would otherwise not be entitled to have ◦         Disability benefits ◦         Tax breaks ◦         Reduced admission costs at public and private functions and venues   When it is discovered by people in the online and offline autism community that some people are not as functional as they say they are, or are more functional than they say they are, arguing and fighting can break out, and this results in factions forming. The more a faction's members have in common with one another, the stronger the bond between the faction's members. In

In reality, if they are autistic, they may either identified as:   ◦         High-functioning, or ◦         Low-functioning   by their physicians. But diagnosed autistics, self-diagnosed people, people in the process of getting a diagnosis, people seeking a diagnosis,  wannabees, and misdiagnosed individuals may consider themselves to be either:   ◦         High-functioning, or ◦         Low-functioning   regardless of how their physician has identified them. Many times diagnosed autistics, self-diagnosed people, people in the process of getting a diagnosis, people seeking a diagnosis, wannabees, and misdiagnosed individuals will call themselves high-functioning when they aren't. They

It seems as though autism is being portrayed in literature less as a diagnosis, and more as a minority lifestyle. Sometimes it is even portrayed as a culture or cultural imperative. Much of what is written by “autistics” is actually being written by “self diagnosed” autistics, and no matter who is doing the writing (autistic author or self-diagnosed author), plots, characterization, and other elements, are many times being drawn and presented based on observation of “autistics” with unconfirmed diagnoses in informal venues rather than upon observations of real, diagnosed autistics in realistic or controlled settings. The

Linda Kreger Silverman describes giftedness as follows: Gifted children and adults see the world differently because of the complexity of their thought processes and their emotional intensity. People often say to them, ‘Why do you make everything so complicated?’ ‘Why do you take everything so seriously?’ ‘Why is everything so important to you?’ The gifted are ‘too’ everything: too sensitive, too intense, too driven, too honest, too idealistic, too moral, too perfectionist, too much for other people! Even if they try their entire lives to fit in, they still feel like misfits. The damage we do to gifted children and adults by ignoring this phenomenon is far greater than the damage we do by labeling it. Without the label for their differences, the gifted come up with their own label: ‘I must be crazy. No one else is upset by this injustice but me.’ (Silverman 1993)

There are three categories of criteria that an individual must meet in order to be diagnosed with ASD. The categories are listed below along with the typical traits, which may indicate whether the individual needs further assessment: 1.Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays: lack of friends and social life friends often much older or younger mumbling and not completing sentences issues with social rules (such as staring at other people) inability to understand jokes and the benefit of ‘small talk’ introverted (shy) and socially awkward inability to understand other people’s thoughts and feelings uncomfortable in large crowds and noisy places detached and emotionally inexpressive. 2.Restricted, repetitive patterns of behaviour, interests or activities: obsession with ‘special interests’ collecting objects (such as stamps and coins) attachment to routines and rituals ability to focus on a single task for long periods eccentric or unorthodox behaviour non-conformist and distrusting of authority difficulty following illogical conventions attracted to foreign cultures affinity with nature and animals support for victims of injustice, underdogs and scapegoats. 3.Restricted, repetitive patterns of behaviour, interests or activities: inappropriate emotional responses victimised or bullied at school, work and home overthinking and constant logical analysis spending much time alone strange laugh or cackle inability to make direct eye contact when talking highly sensitive to light, sound, taste, smell and touch uncoordinated and clumsy with poor posture difficulty coping with change adept at abstract thinking ability to process data sets logically and notice patterns or trends truthful, naïve and often gullible slow mental processing and vulnerable to mental exhaustion intellectual and ungrounded rather than intuitive and instinctive problems with anxiety and sleeping visual memory.

do recognise that some with Asperger syndrome (ASD) can socialise very well, but it’s at the cost of intellectual and emotional exhaustion, and this can confuse others in terms of sometimes seeing social competence but other times seeing a great need for social withdrawal and isolation

The number of diagnoses of autism spectrum disorder almost certainly went up dramatically for another reason, one that hasn’t gotten as much attention as it should: a typographical error. Shocking but true. In the DSM-IV, the description of pervasive developmental disorder not otherwise specified that was supposed to appear in print was “a severe and pervasive impairment in social interaction and in verbal or nonverbal communication skills” (emphasis added). What actually appeared, however, was “a severe and pervasive impairment of reciprocal social interaction or verbal and nonverbal communication skills” (emphasis added). Instead of needing to meet both criteria to merit the diagnosis of PDD-NOS, a patient needed to meet either.

The popularity of biomedical treatments for autism mirrored the general rise of interest in so-called complementary and alternative medicine in recent decades. By the first years of the twenty-first century, the trade in high-dose vitamins and supplements had become an economic powerhouse, with annual sales topping $33 billion. Americans now consult their homeopaths, naturopaths, herbalists, acupuncturists, chiropractors, and Reiki workers more often than they see their primary care physicians. Up to three quarters of all autistic children in the United States receive some form of alternative treatment, with dietary interventions often beginning even before their diagnosis.

You'd have to ask Leyla if you want to know more. She's a psychologist. One of a dozen on board. We don't just want our passengers to survive—we want them to be OK. We're dealing with a lot of trauma. So if you ever need to talk..." "I'll pass." "Bad experiences?" "Sort of." "What happened?" I shrug. "It took a long time to diagnose me." "From what I understand, autistic girls often don't run into trouble until a later age." I bark out a laugh. Oh, I ran into trouble, all right. I barely said a word between the ages of four and six. I hit three of my preschool and grade school teachers. In a class photo taken when I was seven, my face is covered in scratches from when I latched onto a particularly bad stim. Therapists and teachers labelled me as bipolar, as psychotic, as having oppositional defiant disorder, as intellectually disabled, and as just straight-up difficult, the same way Els did. One said all I needed was structure and a gluten-free diet. When I was nine, a therapist suggested I might be autistic, at which point I had already started to learn what set me off and how to mimic people; within two years, I was coping well enough to almost-but-not-quite blend in with my classmates. It's funny when people like Els have no idea anything is off about me, given that my parents spend half my childhood worrying I'd end up institutionalized. At the time, I thought the diagnosis was delayed because I was bad at being autistic, just like I was bad at everything else; it took me years to realize that since I wasn't only Black, but a Black girl, it's like the DSM shrank to a handful of options, and many psychologists were loath to even consider them.

Jack’s paper diagnosis fails to capture the beautiful gifts of his autism. He seems to have a heightened sense of hearing which allows him to perceive the slightest difference in sound and music, and he has a remarkable memory with an uncanny capacity to retain information.

I know autistic kids—” “Kids with autism,” I interrupt instinctively. “Huh?” “The child isn’t their diagnosis. It’s people-first language. You don’t say ‘cancer kids,’ do you?

A common source of disappointment and frustration for parents is the letdown that happens soon after diagnosis. Parents seek diagnostic evaluations both to better understand their child and also to have that child be eligile for services. Many, if not most, parents are not aware that it can take months to find and secure these resources and to get an actual appointment. Additionally, the cost of these services is often far greater than anticipated. One parent, who participated in in-depth interviews by researchers interested in the partnership between parents and providers, had this to say, "It felt like you were being taken to the edge of a cliff. You've been given the diagnosis, you got shoved off the end, and then it was, 'Oh by the way, we haven't got the parachute. You'll need to get that for yourself.' You feel like you finally got there, and you're quite happy, you're ready to fly - but then all the sudden you don't have the rest of the equipment you need to fly with.

Unfortunately, for some children, “gray” thinking doesn’t develop readily. These are the kids who sometimes end up with diagnoses on the autism spectrum, but regardless of diagnosis they’re best thought of as black-and-white thinkers living in a gray world. They often have significant difficulty approaching the world in a flexible, adaptable way and become extremely frustrated when events don’t proceed in the manner they had originally conceived. More specifically, these children often have a strong preference for predictability and routines, and struggle when events are unpredictable, uncertain, and ambiguous. These are the kids who run into trouble when they need to adjust or reconfigure their expectations, the ones who tend to overfocus on facts and details and who often have trouble recognizing the obvious or “seeing the big picture.” For example, a child may insist on

gaining acceptance, and there’s a difference between using the internet as a way to develop a sense of fluency and competence, and retreating into it because we feel we have no other choice. Thomas tells me that as he’s come to understand his own Autism and work on unmasking, he’s gotten better at noticing how he feels and figuring out how to care for himself. For many years, particularly before his diagnosis, he would just push his emotions and desires away. “This week I noticed my energy replenishment was at a standstill,” he says. “I couldn’t focus on data work, which is normally one of my passions. I journaled about it a bit and realized my girlfriend has been home more than usual lately. I love her, but being around her all day was overstimulating me.

My neighbors are likely not autistic. They are likely neurotypicals (NT). That means they live with the privilege of having a brain that works like 98.5% of the population

Alexithymia is translated as “no words for feelings” and can be described as the inability to understand and process emotions, which also affects how they communicate their emotions to others.

little me i run my fingers over her sharp edges. "don't they hurt you?" she asks, in her little voice. "no, they don't," i reply. "you gave me such strong hands your edges aren't sharp to me. i was made to run my fingers over the hard parts of you, and i will hold the most painful parts of you for as long as you need--" i don't know if it's my voice or my calloused hands, but she becomes softer.

If you have been misunderstood your whole life, take heart, you are not alone. There are many people who have been diagnosed with ASD as adults. It is never too late to receive a diagnosis.

Yet the autistic woman is not masking with the intention of being deceitful. Her true self is invisible even to her own person. She is masking to fit in, and doing so unconsciously. Often, she doesn't even understand that she has been camouflaging herself until she gets her diagnosis. Before that, she thinks her struggle is everyone else's, too. At least, that's what it was like for me.

Time is hard for me to understand. I want everything to remain like it is right now, without change. Impossible, I know, but change is too often bad. Change is inevitable, but when it hits you in the face with such honest and emotional words it stings.

For all the reasons outlined above, I firmly support Autistic self-determination. I prefer the terms self-determination or self-realization to self-diagnosis, because I believe it’s more sensible to view Autistic identity through a social lens than a strictly medical one.[75] Diagnosis is a gatekeeping process, and it slams its heavy bars in the face of anyone who is too poor, too busy, too Black, too feminine, too queer, and too gender nonconforming, among others.

I had naively thought that my diagnosis was all the evidence I needed to obtain the assistance I was asking for–I hadn’t realized that I had to perform the role of someone with that diagnosis. I hadn’t realized that this role necessitated that I display some kind of perceptible inferiority to my assessor. I had often failed at being a woman. Now, apparently, I was failing to be autistic.

I could only be defined by my diagnosis if I allowed it, was monumental.

They had been through hell when their little boy was born, and now they were suffering again. Knowing something, but then having it confirmed by an expert are two different things. Their life with autism had begun.

... each day provided some tiny step forward, some steps so small you would miss them if you weren't looking. I'm always looking- eager to witness that next miracle.

It is my own personal opinion that for someone to state that an autistic person 'lacks empathy' is to declare ignorance of the reality of autism.

While grief is a natural part of any special needs parent's journey, it may be processed somewhat differently for the family affected by a diagnosis with a wide range of outcomes, such as autism. Every child with or without a disability is unique. And no special-needs diagnosis affects any two children the same way.

diagnosis, undertake a process of Parent Training and/or therapy Mediated by parents to promote proper ways to interact with

Again, heterogeneity is the problem, because the diagnosis of autism is based on behaviors, and autism shares those behaviors with other diagnoses.

But the person who has done more than any other to popularize the myth is the model/actor/TV host Jenny McCarthy, who, in her many high-profile interviews on the topic, repeatedly characterized her son’s autism as a cataclysm that invaded an otherwise perfect life. When a doctor gave her the diagnosis, McCarthy reports, “I died in that moment.” She has continued to spread misinformation for well over a decade, telling PBS’s Frontline in 2015, “If you ask 99.9 percent of parents who have children with autism if we’d rather have the measles versus autism, we’d sign up for the measles.

Autism is not a behavioral diagnosis. Autism is a neurodevelopmental diagnosis. Behaviorist practices focus solely on changing outward behaviors.

The so-called ‘psychotically depressed’ person who tries to kill herself doesn’t do so out of quote ‘hopelessness’ or any abstract conviction that life’s assets and debits do not square. And surely not because death seems suddenly appealing. The person [whose] invisible agony reaches a certain unendurable level will kill herself the same way a trapped person will eventually jump from the window of a burning high-rise. Make no mistake about people who jump from burning windows. Their terror of falling from a great height is still just as great as it would be for you or me standing speculatively at the same window just checking out the view . . . The variable here is the other terror, the fire’s flames: when the flames get close enough, falling to death becomes the slightly less terrible of two terrors. It’s not desiring the fall; it’s terror of the flames. And yet nobody down on the sidewalk, looking up and yelling ‘Don’t’ and ‘Hang on!’, can understand the jump . . . Not really. You’d have to have personally been trapped and felt flames to really understand a terror way beyond falling.5

The second edition of the Diagnostic and Statistical Manual of Mental Disorders was published in 1968, and, unlike its 1952 predecessor, it contained not one mention of autism. As best as I can tell, the word autistic did appear twice, but again, as in the DSM-I, it was there only to describe symptoms of schizophrenia and not in connection with a diagnosis of its own. “Autistic, atypical, and withdrawn behavior,” read one reference; “autistic thinking,” read another.

It can also be awkward when you argue with your partner, for the very person you go to for comfort and advice is the one person you can’t go to in that situation.

High-functioning autism is not a disability but a different way of seeing life, and we should focus on our skills and the things we are capable of rather than the things we cannot do. We are defined by our abilities and our potential, not our problems.

In the past, the number of children diagnosed was lower. The change is mostly likely due to an improved definition and a better understanding of autism; greater access to resources for parents of autistic children, leading more to seek diagnosis; and wider access to medical care.

The diagnosis of autism increased from 1988 to 1999, by seven times, but the vaccination rate had remained relatively stable at about 95 percent.

Feels real, not necessarily true

The label neurodiverse includes everyone from people with ADHD, to Down Syndrome, to Obsessive-Compulsive Disorder, to Borderline Personality Disorder. It also includes people with brain injuries or strokes, people who have been labeled “low intelligence,” and people who lack any formal diagnosis, but have been pathologized as “crazy” or “incompetent” throughout their lives.

We remain hidden, tucked away behind corporations aiming to change us, pushing supplements and instant cures into the hands of desperate parents looking to make our lives better. We're hidden behind psychiatrists who will diagnose us with anything and everything else, because they know that people have a negative view of autism. We're hidden behind an education system that dehumanizes us and makes us sure everyone else treats us like we are less than human. We're hidden behind the mask that we create ourselves to try and blend in, to not be caught.

It's such a huge relief to finally know without any doubts that there's a real answer to my lifelong struggles. I've cried and celebrated and despite those feelings, it's still not quite real yet.

you are not ‘ungrateful’ for not feeling overcome with joy when receiving your diagnosis.

The first intriguing statistical question is whether we are experiencing an epidemic of autism, an “epidemic of diagnosis,” or some combination of the two?

meltdowns or shutdowns: periods of intense emotional upset, often characterized by uncontrollable crying, physical withdrawal from the surrounding environment and/or reduction in verbal skills, often followed by a period of intense fatigue

Getting an official diagnosis as an adult is difficult:

O’Toole believes firmly enough in this goal that she thinks everyone who suffers with an eating disorder of any kind should always be evaluated in terms of a possible larger spectrum diagnosis, not to discover what’s wrong, but to assure them of what’s okay about their thoughts and feelings and to help move them toward recovery.

Not only is “Asperger Syndrome” a diagnosis that is no longer even given (it was absorbed into a general autism spectrum identification in 2013), there’s no “considered” here. There’s no such thing as more or less “severely” autistic.

After Janie’s diagnosis, I often caught myself staring at her, wondering what was happening in her mind. She perceived the world so differently. Just as she struggled to understand the world around her, I wanted to understand her inner world. Autism is a part of Janie’s personality and her thinking—and her mind is amazing. I want Janie to follow the beat of her own drum. I love that drum. I would never change who Janie is at her core, but I also don’t want her autism to cause her to miss out on life.

DSM-IV unwittingly contributed to three new false epidemics in psychiatry—the overdiagnosis of attention deficit, autism, and adult bipolar disorder.