Im Autistic I Didnt Know Until I Was 27
Autism spectrum disorder is inseparable from who I am. I wish only that it hadnt taken so long to find out.
Ms. Eloise is a writer.
For my entire life, I have found it very difficult just to exist.
In childhood photographs, tellingly, Im almost always looking off camera. My little hands clenched, Im rarely with other people and often engrossed in one of the few activities that made me feel safe. Im also, in some, clearly distressed: A photo of me on the beach, eyes full of tears as I pull off my swimsuit, stands out. The textures of the suit, salt and sand on my skin made me feel like I was burning, but I stubbornly insisted on swimming in the sea anyway.
As an adult, the sights, sounds and smells of everyday existence still overwhelm me. I struggle with everything from waking up to moving my body around to talking clearly and I quickly get exhausted in other peoples company. I suffer from meltdowns where, until fairly recently, I would intentionally hurt myself. I had expected to grow out of being fussy or obsessive or angry, but I never did. My difficulties became a larger, less forgivable obstacle as I grew up.
Such a late diagnosis might seem unusual, but it isnt actually that rare especially for women. For a long time, it was dangerously assumed that we couldnt even be autistic. Research now shows that autism in women is diagnosed both later than in men and much less often. That doesnt mean fewer of us are autistic. It just means were overlooked.
And To Anyone Whos Still Not Convinced May I Present My Final Case
Here we go
If everyone really were a little autistic, autism-friendly cinema screenings would not be a new thing.
If everyone really were a little autistic, shopping centres wouldnt be so terrifying.
If everyone really were a little autistic, the unwritten social rules would be clearer. Maybe theyd even be written down.
If everyone really were a little autistic, schools would already know how to cater for an autistic childs needs, without requiring specific autism training that their budget cant afford.
If everyone really were a little autistic, rates of anxiety and mental health issues would go through the roof.
If everyone really were a little autistic, society would be driven more by right and wrong than appropriate and inappropriate.
If everyone really were a little autistic, automatic hand-dryers would be banned in public places.
If everyone really were a little autistic, fashion designers would be more concerned about how soft and comfortable their clothes are than whether or not they look fashionable.
If everyone really were a little autistic, people like me would pass job interviews.
If everyone really were a little autistic, people would actually say what they mean, rather than drop subtle hints then blame us for not correctly interpreting the inside of their heads.
If everyone really were a little autistic, my career as an autism trainer;wouldnt need to exist.
It Is Up To Us To Decide How We Identify It Is Not Upto Others To Decide On Our Behalf
Like the saying goes in disability-relatedcommunities: nothing about us without us.If no autistic person has had any influence in a decision made about autisticpeople, then that decision is not valid.
So equally, when it comes tolanguage choices, the person themselvesshould be the one to decide and nobody else gets to overrule them. That meansthat if I choose to talk about myself using identity-first language, nobodywithout autism has earned the right to correct my language.
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Are We All A Bit Autistic
Yes While we are still a long way from being able to diagnose autism with 100% certainty, according to the most recent medical manual the DSM-5 , to be diagnosed as autistic, people must meet criteria relating to two key areas deficits in social communicational ability and restrictive/repetitive behaviour patterns.
For these reasons, many have made the claim that we are all a bit autistic as, while not everyone has a hard time in social situations or has as burning a desire for routine as autists, most people do possess these qualities to a degree for example: being introverted, misjudging social protocol or, if youre my girlfriend, having an encyclopaedic knowledge of the Gilmore Girls.
No However, while it may be possible to say that someone is a little bit autistic because they demonstrate similar signals of the condition, a true diagnosis of autism is rooted in how these aspects impact on a persons life. For example, while you may get a bit shy out in public, someone who is autistic can feel a very real, very painful anxiety. While similarly, that hobby or interest which you spend so much time thinking about is, in all probability, just a way to unwind. For an autist its a lifeline; something to make sense of an unpredictable world, as well as an obsession which gets lodged in our brain and calls out for us to devote all our time and energy to it.
Diagnosis Of Autism: What We Do Know
Autistic children benefit from early diagnosis, preferably in the first two years of life.; Early diagnosis allows behavioral therapy or other treatments to begin early when it seems to be most effective.; If you are concerned about your child, talk to your doctor about a referral to see a specialist who can help determine if follow-up is needed.; Signs of autism may include symptoms such as:
- no babbling or pointing by age 1
- no single words by 16 months or two-word phrases by age 2
- no response to name
- loss of language or social skills
- poor eye contact
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Top 10 Facts About Adult Autism
Steven Gans, MD, is board-certified in psychiatry and is an active supervisor, teacher, and mentor at Massachusetts General Hospital.
People with autism, like everyone else, are adults for much longer than they are kids. That’s an easy fact to overlook when you search online for information about autism,;because most articles and images focus on young children.
While it’s true that symptoms of autism appear first in early childhood, autism is not a pediatric disorder. Adults with autism face lifelong challenges.
So why is relatively little written about autism and adulthood? While there’s no absolute answer, here are some educated guesses:
- Autism manifests before age 3, so most new diagnoses of autism are in children.
- Most people who actively read about autism are worried-but-hopeful parents of children who are or may be autistic.
- Because of the changes in how autism is defined, many adults now considered autistic never received an autism diagnosis.
- High-functioning adults with autism;are often uninterested in reading about non-autistic perspectives on autism.
- Some adults with autism have intellectual disabilities that make it extremely difficult to read about autism.
Why Is Autism Increasing So Much
Youve probably seen the Autism Speaks;ads: Every two seconds a child;is diagnosed with autism.;As I write this today, the CDC has determined that 1 in a 54 people or 2% of males has an autism spectrum disorder !1Ever since Bob Wright, former president of NBC, became the grandfather of a child with autism and created Autism Speaks, awareness of and research on the condition has skyrocketed. Given this prevalence, you probably know someone who has a child with an ASD.
Welcome to my world. I am a developmental and behavioral pediatrician who has specialized, over the last 30 years, in caring for, diagnosing, and helping literally thousands of children and adolescents with ASD.
Over this time, my patients and their families have taught me so much about what it means to both struggle and grow and;accept what cant be changed.; I have learned to see through the eyes of the differently abled and their families. I have been witness to the miraculous potential within many of these children and adolescents who become fully functional and even indistinguishable from their peers . Recent research has found that the child with autism who receives intensive early intervention can outgrow their diagnosis.2;In my practice, I have many children who, over time, no longer met the official criteria for an autism spectrum disorder.
with lilacs. The last descendant.
J Child Psychol Psychiatry.JAMA Psychiatry.
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Who Decides How Disabled We Are
Disablement is not as simple a concept as some might think. Is everyone disabled? No. Can the degree to which you are disabled change throughout your life? Yes. Whilst the phrasing might be a little awkward it is for this reason that someone might actually refer to themselves as a little bit Autistic. To give an example I have a Dyspraxic colleague who often wonders if she is also Autistic. This could be because there is some overlap between the two conditions, but it could also be that she is actually Autistic but not in a way that has ever warranted further investigation, most likely because as a female her need to withdraw to decompress from sensory overwhelm was typed as “introverted”. If we move beyond narrow definitions, she identifies as neurodiverse, with experiences and traits that make her feel aligned with a broader range of experiences than one diagnosis can explain.
Disability is not a competition and we should certainly not be fighting amongst ourselves as to whose experiences are more valid than the others. I believe we have become so used to a position of needing to fight for our rights or for limited funding that we are sometimes doing this in places where it is not needed, to the detriment of others.
Thank you to Helen Doyle for her essential contribution to this article.
It Wasnt Called Autism Before
Autistic children and adults were often not labeled autistic until recently. The term autism was often tied to schizophrenia in research, so many, many people went undiagnosed. Even more people, however, were misdiagnosed.
Often autistic people would be diagnosed as challengedlanguage impaired or mentally retarded .
With modern diagnostic criteria, many people who received those diagnoses would fall within the autism spectrum if diagnosed today. In fact, the diagnostic criteria is still changing to attempt to become more accurate.
For example, many children who were originally diagnosed with Asperger Syndrome are finding that their diagnosis doesnt even exist anymore, now its all under the ASD umbrella. A lot more kids are diagnosed autistic now that we know what autism actually is.
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Know That Medical Issues Can Be Involved
I wish I had known about the invisible medical issues of autism right from the start. For years, I had no idea that gastrointestinal dysfunction, including constipation, acid reflux, inflammation and pain, could dramatically affect my sons sleep patterns, mood, irritability, aggression, attention, and even communication. Our son had to power through those problems all by himself on a daily basis, and it breaks my heart that we never suspected the cause of many of his struggles.
Janet Lintala, West Virginia
Diagnosis In Young Children
Diagnosis in young children is often a two-stage process.
Stage 1: General Developmental Screening During Well-Child Checkups
Every child should receive well-child check-ups with a pediatrician or an early childhood health care provider. The American Academy of Pediatrics recommends that all children be screened for developmental delays at their 9-, 18-, and 24- or 30-month well-child visits and specifically for autism at their 18- and 24-month well-child visits. Additional screening might be needed if a child is at high risk for ASD or developmental problems. Those at high risk include children who have a family member with ASD, have some ASD behaviors, have older parents, have certain genetic conditions, or who were born at a very low birth weight.
Parents experiences and concerns are very important in the screening process for young children. Sometimes the doctor will ask parents questions about the childs behaviors and combine those answers with information from ASD screening tools, and with his or her observations of the child. Read more about screening instruments on the;Centers for Disease Control and Prevention website.
Children who show developmental problems during this screening process will be referred for a second stage of evaluation.
Stage 2: Additional Evaluation
This second evaluation is with a team of doctors and other health professionals who are experienced in diagnosing ASD.
This team may include:
The evaluation may assess:
- Blood tests
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When You Change Your Expectations The World Will Grow
I wish we knew that autism just means different, not less. Instead of baseball games in elementary school we would have sensory integration programs. I wish we knew then that it will be OK some days will be hard, some days will be beautiful and at the end of each of them when we tuck our son into bed, the most important thing we can do is make sure he knows he is loved.
Tabatha and Tony Rainwater, Knoxville, Tennessee
Great Strengths And Abilities
In general, people with autism are honest and dependable; most are focused on their work and are rarely distracted by social activities or outside interests.
Quite a few have exceptional talents in areas such as computer coding, mathematics, music, drafting, organizing, and visual arts. While it can be tough for autistic adults to set up and manage their own space and schedules, many are outstanding employees.
Some corporations have started to recognize the value of actively recruiting and hiring autistic individuals; a few include:
- Freddie Mac
- SAP
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Child With Autism=adult With Autism
Despite stories you may have read on the Internet, it is incredibly rare for a child accurately diagnosed with autism to become an adult who is no longer diagnosable.
Yes, children with autism may build skills and workarounds that make autism less obvious. Yes, teens with autism may learn social skills and be able to “pass” in some situations. But no, a child with autism won’t just get over their autism to become a typical adult.
Tics And Repetitive Behaviors
You can’t stop pacing, biting your nails, or twirling your hair because you’re feeling tense.;This is not uncommon.
But with autism, individuals are more likely to “stim,” a symptom characterized by repetitive rocking, flicking, flapping, or speech used to calm themselves. In addition, they are likely to “stim” for other reasons, including excitement or anticipation.
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New Research On Autism And Our Environment
Sex hormones, medications, certain metals such as lead, pesticides, and chemicals used to make plastic hard or pliable have long been suspected of having a role in autism.; They have not been proven to cause autism, but these are known to trigger or worsen other health problems, including some that affect the brain.; Many studies have shown that chemical exposures during development in the womb can have much more serious health effects than the same exposures would in adults.
A large 2014 study investigated the connection between autism and genital malformations using health insurance claims from almost a third of the U.S. population. Like autism, genital malformations are increasing: cases of undescended testicle increased 200% between 1970 and 1993, and the percentage of boys born with a deformity of the penis known as hypospadia doubled. ;;Many studies have shown that these malformations are more common among children whose mothers have high levels of chemicals that affect the hormones in their bodies, such as phthalates which are found in cleaning products, medicines, and personal care products like shampoos and creams The link between these chemicals and genital malformations has surfaced in other studies, particularly those involving women in professions that require working daily with these chemicals.
What Are The Symptoms Of Autism
The most obvious symptoms tend to involve communication and interaction with others.
Autistic people may have different ways of learning, thinking, and problem-solving. Intellectually, autistic people can fall on a range from severely challenged to gifted.
Everybody is different. Some people will have many symptoms, and some will have only a few. Signs of autism in a 3-year-old or 4-year-old may look different from those who are teens or adults. Some autistic people may be able to mask their symptoms.
General signs of autism may include:
- not responding to their name
- avoiding eye contact or not showing an awareness when others are speaking
- not understanding sharing or taking turns
- not looking at objects shown to them
- not pointing or responding to pointing
- having difficulty understanding facial expressions
In older children and adults, you might also notice:
- having difficulty reading body language, facial expressions, and other social cues
- not getting sarcasm, teasing, or figures of speech
- speaking in monotone
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Find Other Parents Who Will Understand And Support You
“It always has been invaluable to have other parents who are going through the same thing as you are, to call them up and say I cant believe this is happening to me today. Because to the rest of the community, the things that happen to us, theyre really not the norm.” Ruth Singer Strunck, the mom of two young adults with autism
Why So Many People With Autism Have Eating Disorders
Of course, all parents of late-talking children should be sure to have their child screened for autismand all other clinical conditions associated with late talking: speech disorder, language disorder, hearing loss and intellectual disability while also bearing in mind that many late-talking children do not have any disability whatsoever. But never forego assessment simply because the odds are favorable that a late-talking child does not have autism.
But, also be prepared for an even more dramatic increase in the next round of autism data and a HUGE increase in the reported incidence in 2020and beyondbecause the latest 2018 data do not include children who were screened in 2010 at age 2 when the new guidelines for screening 2-year-olds were initiated. That is, national data are for autism in 8-year-olds, but are not reported until four years after a birth cohort turns eight. This years increase is based on children who turned eight in 2014 and were thus born in 2006. The 2020 data will be for children born in 2008, and then screened as 2-year-olds in 2010. They will turn eight in 2016and be reported in the national data in 2020.
References
Autism Spectrum Disorder. Data and Statistics. . Centers for Disease Control and Prevention. accessed 4.29.2018.
Godlee, F., Smith, J., Marcovitch, H. Wakefields article linking MMR vaccine and autism was fraudulent. BMJ. 2011; 342: c7452. Accessed 01/25/2018.
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