How Is Autism Spectrum Disorder Diagnosed
There are no laboratory tests to determine ASD. However, certain healthcare providers receive specific training and can do screenings and evaluations if needed and who might ask parents or teachers to record observations. These providers might include specialized physicians, psychologists and speech-language pathologists.
Families Facing The Medical Transition To Adulthood
In fact, the prospect of having to educate a whole new crop of doctors worries some young adults, and their parents, as they leave their pediatricians. Parents also may face another challenge: U.S. privacy laws make it harder for them to be involved in adult children’s health care, unless their children agree to it, or they go to court to become their guardians.
Cheryl Hammond is her adult son’s guardian, a legal process she undertook so that she could protect his interests in adulthood. Yet she still encountered problems with his health care. When her son was 18, he needed stitches for a wound at a hospital emergency room in Ohio, where they live. She tried to accompany him into the treatment room, but hospital staff stopped her. “He’s 18,” a hospital employee said. “You can’t go back there with him.” Ms. Hammond whipped out the legal paper proving that she was his guardian. “They still argued with me. I had to go to the person over his head, “said Ms. Hammond, a participant in the Simons Simplex autism research project.
Why, she asks, does the health care system act as though something transformative happens on a person’s 18th birthday? Her son had the same needs he had a day earlier, but after 18, her role and his doctors had to change. “All of a sudden the brakes stopped when the clock turned one more second over, and everyone said, ‘He’s an adult now. You have to take him to another doctor.'”
Reflections On Parenting With Autism
Jessica Benz of Dalhousie in New Brunswick, Canada, is the mother of five children. She received her autism diagnosis as a result of seeking answers to her kids’ challenges. Here are her reflections and tips on parenting as an adult on the autism spectrum.
What led you to discover your own;autism;diagnosis? Do you recommend seeking a diagnosis if you think you might be diagnosable?
My own diagnosis came about as an adult;after two of my children had been diagnosed and we began to discuss family history with one of the psychologists we worked with.;When I mentioned certain experiences as a child lining up with what I saw in my own children, a light bulb went off.
I pursued further screening and assessment from there, if only to better understand myself as a person, and as a parent. I think that more information is always better, especially about ourselves. If someone feels like autism;might be part of the tapestry making up their own lives, it is worth asking about it and asking for an assessment.
Just as we check laundry labels for care instructions, the better we understand what makes up our own lives and selves, the better we can ensure we are using the right settings in terms of self-care and interaction with other people.
Did learning that you are;autistic;affect your decision to have children? And if so, how did you make the decision?
What kinds of;parenting;challenges do you face because you are;autistic?
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Autism As A Clinical Priority
From 2014 to 2017 autism was championed by the Royal College of General Practitioners . A suite of resources were developed to support GPs in their care of autistic patients. Engagement on this topic allowed the RCGP and GPs to be represented in national policy and guideline development.
The RCGP continues to promote proper care of autistic patients, their families, and carers. In its position statement on the subject in June 2016 it recognised the essential role general practice plays in caring for this community, their families, and carers. It committed to promoting evidence-based training on autism, and to sign-posting resources that enable equitable access by this group to primary health care.
The Core Capabilities Framework for Supporting Autistic People and Reasonable Adjustments flag on patient records mark out some of the significant progress that has been made. Much remains to be done, and although sensitivities to the needs of autistic patients have improved, the experience and needs of autistic doctors have gone, largely, unrecognised.
Autism Is A Genetic Disorder
Although autism was once believed to be the result of improper parenting, researchers now believe that genesnot psychological factorsare to blame. In fact, a 2019 study published in JAMA Psychiatry found that 80% of autism risk comes from inherited genetic factors. The study was widespread, looking at 2 million people from five countries .
If a couple has one;child with autism, there is a 5 to 10 percent chance that siblings will have some sort of autistic disorder. With identical twins, the likelihood is 60 percent. Even though profoundly autistic people rarely have children, researchers often find that a relative has mild autistic symptoms or a high-functioning autism-spectrum disorder.
Experts believe that autism is the result of multiple genes ;anywhere from three to 20 ;interacting with each other. This may explain why the symptoms and severity of the disorder vary greatly. These genes may cause a baby’s brain to develop abnormally in utero or make him more susceptible to unknown triggers. “There is probably a combination of genetic and environmental influences,” says Catherine Lord, Ph.D., director of the Center for Autism and Communication Disorders at the University of Michigan, in Ann Arbor. Although the genes linked to autism have not yet been pinpointed, intense research is under way.
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Kids Are Getting Diagnosed Sooner
There’s no laboratory or medical test for detecting autism, so doctors must rely on behavioral signs. In the past, many were reluctant to label a child as autistic until symptoms became obvious. “The average age for diagnosis had been about 3.5, with many children diagnosed much later,” says Amy Wetherby, Ph.D., director of the Center for Autism and Related Disabilities at Florida State University, in Tallahassee. But that’s changing.
One reason is that pediatricians are becoming more aware of autism. At the same time, autism specialists are better at identifying early telltale signs such as a lack of babbling or pointing. “Most children with autism will show some signs of developmental disruption by their first birthday,” says Rebecca Landa, Ph.D., an autism researcher at Baltimore’s Kennedy Krieger Institute.
And while no one is yet diagnosing autism in children that young, doctors can now make a reliable assessment by 24 months;when a child’s brain is still rapidly developing. “If we can intervene while a child’s brain is very immature, it will be much easier to help change her behavior,” Dr. Wetherby says.
What Is The Double Empathy Problem
Can you tell when somebody is bored or frustrated or upset with you, even when they do not say so? People often communicate information about themselves without even saying a word. The expressions on their faces or the ways they are acting can be big clues to what they might be feeling or thinking. Being autistic affects how people make sense of the world around them, and some autistic people can find it hard to communicate. For a long time, research has shown that autistic people can have trouble figuring out what non-autistic people are thinking and feeling, and this can make it difficult for them to make friends or to fit in. But recently, studies have shown that the problem goes both ways: people who are not autistic also have trouble figuring out what autistic people are thinking and feeling! It is not just autistic people who struggle.
- Figure 1 – Autistic and non-autistic people can find it difficult to understand each other.
- The fact that both people in the interaction have trouble with understanding is why the theory is called the double empathy problem.
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The Problems With Prenatal Testing For Autism
As prenatal testing improves, it presents a host of thorny issues including what to test, how to interpret the results and what to do about them.
by ;/;14 August 2019
When Maureen Bennies son, Marc, was 10 months old, he started missing developmental milestones. He had had feeding problems since birth and developed a sleep disorder and Bennie quickly grew concerned. I had friends who had children around the same time, she says. He really was a very, very different baby in all regards.
Bennie took Marc to see a doctor but did not come home with a clear diagnosis. And when she got pregnant again when Marc was 17 months old, it didnt cross her mind that the child she was carrying might face similar challenges. Marcs autism diagnosis was confirmed when he was almost 3. His baby sister, Julia, was diagnosed about a year later at 23 months. You just cant believe its happening the second time around. You think: what are the chances? says Bennie, who later founded the Autism Awareness Centre Inc, a company based in Canada.
When that happens, experts warn, it is likely to bring with it a host of thorny issues. Some say the tests may lead to more terminations to the detriment of a societys neurodiversity. In Iceland, for example, only about two children with Down syndrome have been born each year since the introduction of prenatal tests for the syndrome in the early 2000s.
What Is The Outlook For People With Autism Spectrum Disorder
In many cases, the symptoms of ASD become less pronounced as a child gets older. Parents of children with ASD may need to be flexible and ready to adjust treatment as needed for their child.
People with ASD may go on to live typical lives, but there is often need for continued services and support as they age. The needs depend on the severity of the symptoms. For most, it’s a lifelong condition that may require ongoing supports.
A note from Cleveland Clinic
Through research, there has been much that has been learned about autism spectrum disorder over the past 20 years. There is ongoing active research on the causes of ASD, early detection and diagnosis, prevention and treatments.
Last reviewed by a Cleveland Clinic medical professional on 12/29/2020.
References
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Myths About Autistic Parents
There are a great many myths surrounding autism. These myths can make it hard to understand how an autistic person could be a good parent. Here are just a few such misunderstandings about autism:
- People with autism don’t feel normal emotions. While people with autism may have slightly different reactions to particular situations or experiences than some of their neurotypical peers, they do feel joy, anger, curiosity, frustration, delight, love, and every other emotion.
- People with autism can’t love. As stated above, this is completely untrue.
- People with autism can’t empathize with others.;In some cases, it is hard for an autistic person to put themselves into the shoes of someone else who wants, feels, or reacts in ways that are outside of their own experience. But this is true for anyone. For example, it’s hard to empathize with a child who wants to do things you dislike.
- People with autism can’t communicate well. People with high-functioning autism use spoken language as well as neurotypical peers. They may, however, have difficulty with “social communication.” They may need to work harder to make sense of body language or subtle forms of communication such as nonverbal cues.
What Does A Certified Autism Specialist Do
An autism specialist is someone who works with children who are diagnosed with ASD, which can include a range of behaviors and challenges. Not all children who have been diagnosed on the spectrum behave the same way or struggle with the same issues. Some children with ASD may have extreme sensory processing issues, such as reacting negatively to loud noises or unpleasant smells. Others may have difficulty with social interactions, such as being able to process anothers emotions or using appropriate manners. Children with ASD can have mild or severe neurological challenges.
Autism specialists who get an advanced autism certification learn the specific skills necessary to work with these children and help them meet their goals. They can provide therapy or assistance in a classroom, private counseling, or even at home. For example, Dr. David Rago, the academic program director of the Graduate Certificate in Autism program at National University, said that an autism specialist could help those on the autism spectrum learn social skills through modeling.
It could be learning about visual modeling or peer training, so if theres a specific behavior or social interaction that the student needs to learn, like how to take turns, they could use visual modeling. It could also be in person, in real time, what it looks like to take turns, he says.
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Learning More About Adults With Asd
Dr. Croen launched several Kaiser studies to learn more about the needs of patients and doctors. “We have a large number of pediatric patients with ASD who are becoming adults each year and transitioning from pediatrics to adult medicine. We wanted to know about the health status of adults with autism, their health care utilization patterns, and what the adult providers knew about autism,” she said. Meanwhile, some adults who suspected they have autism had asked Kaiser how they could be tested for ASD.
Society is struggling to understand autism beyond childhood, explained Nancy Cheak-Zamora PhD, assistant professor of health sciences at University of Missouri. “Our society as a whole has not caught up with the increase in diagnoses of autism and our understanding of what autism is and how it progresses throughout the life course. People have to understand that autism doesn’t stop at childhood,” she said.
Ideally, Ms. Gladstone said, medical and therapy practices would be better versed in adult autism. They would understand that she may not be able to provide a “20-second answer” to their questions, and would let her communicate by email as necessary. They would provide several appointment reminders, among other accommodations.
How To Become A Certified Autism Specialist
Over the last two decades, Autism Spectrum Disorder, or ASD, has become a more frequent diagnosis among children in the United States and its a diagnosis that crosses racial, ethnic, and socioeconomic divides. The Centers for Disease Control and Prevention reports that one in 59 children is diagnosed with ASD compared with one in 150 children in the year 2000.
What this means for parents, educators, and for communities is that there are many more children in the classroom who have been identified as having special needs and who need specialized help. Teachers and aides may need to help these students process material in a different way so that they can learn it better, or they may need to help students manage their emotions or learn social skills to better interact with their peers and the world around them.
The growing incidence of ASD and the increased awareness of what these students need to be successful in the classroom has created demand for teachers and professionals who are trained to work with children with autism, specifically. If you are a teacher or professional who is likely to work with children who have ASD, you may want to consider getting more education to become a certified autism specialist.
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Nina Louise Purvis On Why Portrayals Rarely Do The Already Small Numbers Justice As Well As Her Own Experience With Autism
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When I open up about my referral for an autism spectrum disorder assessment, I draw on examples from the only popular reference I have for an autistic doctor whats portrayed on TV.
You have probably seen these medical dramas The Good Doctor, House, Greys Anatomy. There are more. They all have or allude to a stereotype of autism in certain characters.
The Good Doctor himself, Dr Shaun Murphy, is a surgical trainee with excellent memory recall and attention to detail who faces stigma but often saves the day because of his traits, proving those who doubted him wrong. Dr Virginia Dixon was briefly head of cardiothoracic surgery in Greys Anatomy, with her special interest advertised by her relaying of heart-based facts and a tendency to over-explain procedures to patients, as well as a dislike of physical contact and the wearing of extra protective gear during surgery.
While I can relate to some aspects of these characters both struggles and strengths my reality seems to be more exhausting and hidden. Battles such as sensitivity to noise, struggling with small talk, getting lost in the hospital, developing coping mechanisms for organisation, or painfully scrutinising my replies to emails are what I bury and mask with a smile during the working day. Struggles aside, I also feel that some of my traits will allow me to be a great doctor.
Screening And Diagnosis Of Autism Spectrum Disorder
Diagnosing autism spectrum disorder can be difficult because there is no medical test, like a blood test, to diagnose the disorder. Doctors look at the childs developmental history and behavior to make a diagnosis.
ASD can sometimes be detected at 18 months or younger. By age 2, a diagnosis by an experienced professional can be considered very reliable . However, many children do not receive a final diagnosis until much older. Some people are not diagnosed until they are adolescents or adults. This delay means that children with ASD might not get the early help they need.
Early signs of ASD can include, but are not limited to
- Avoiding eye contact,
- Having little interest in other children or caretakers,
- Limited display of language , or
- Getting upset by minor changes in routine.
CDCs Learn the Signs. Act Early. program provides free resources to help families monitor developmental milestones and recognize signs of developmental concerns, including ASD.
As children with ASD become adolescents and young adults, they might have difficulties developing and maintaining friendships, communicating with peers and adults, or understanding what behaviors are expected in school or on the job. They may also come to the attention of healthcare providers because they have co-occurring conditions such as attention-deficit/hyperactivity disorder, obsessive compulsive disorder, anxiety or depression, or conduct disorder.
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