How To Get Tested For Autism As An Adult
July 25, 2014
Todays Got Questions? answer is by neurologist David Beversdorf. Dr. Beversdorf works within theAutism Speaks Autism Treatment Network at the University of Missouris Thompson Center for Autism and Neurodevelopmental Disorders.
Our 6 year old has been diagnosed with autism, and Id like to get evaluated, too. Problem is, I cant find anyone who knows how to diagnose adults. All the tests seem to be designed for children.
Thank you for your question. Its an important one. With awareness of autism so high today, its no longer as common for an autism diagnosis to be overlooked in childhood. However, this wasnt always the case. As a result, its not infrequent that I see teens and adults seeking a diagnosis. Like you, many are parents who begin connecting the dots after one of their children is diagnosed with autism spectrum disorder .
As you discovered, evaluating autism in a previously undiagnosed adult can be challenging. And yes, its true that the standardized diagnostic checklists we commonly use are designed for children. There are no established diagnostic tests for ASD in adults. However, Im glad to report that they are currently in development.
How Common Is Autism Spectrum Disorder
Based on most recent CDC report, ASD is estimated to affect about 1 in 54 children, with boys being more likely to have ASD than girls. There were more than 5 million adults in the US, or 2.21% of the population, with ASD as of 2017. Government statistics suggest that the prevalence of ASD has risen 10% to 17% in recent years.
What Are The Different Types Of Autism
The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition is published by the American Psychiatric Association . Clinicians use it to diagnose a variety of psychiatric disorders.
The most recent fifth edition of the DSM was released in 2013. The DSM-5 currently recognizes five different ASD subtypes, or specifiers. They are:
- with or without accompanying intellectual impairment
- with or without accompanying language impairment
- associated with a known medical or genetic condition or environmental factor
- associated with another neurodevelopmental, mental, or behavioral disorder
Someone can receive a diagnosis of one or more specifiers.
Before the DSM-5, autistic people may have received a diagnosis of:
- autistic disorder
- pervasive development disorder-not otherwise specified
- childhood disintegrative disorder
Its important to note that a person who received one of these earlier diagnoses hasnt lost their diagnosis and wont need to be reevaluated.
Symptoms of ASD typically become clearly evident during early childhood, between 12 and 24 months of age. However, symptoms may also appear earlier or later.
Early symptoms may include a marked delay in language or social development.
The DSM-5 divides symptoms of ASD into two categories: problems with communication and social interaction, and restricted or repetitive patterns of behavior or activities.
Interacting With A Child Who Has Autism Spectrum Disorder
Autism spectrum disorder is a developmental disorder. It affects how children interact and communicate with others. The disorder is called a spectrum disorder because children can be anywhere on the autism spectrum.
Children with ASD start to show symptoms at an early age. The symptoms continue during childhood and adulthood. Healthcare providers dont know why some children develop ASD. It may be a combination of genes they are born with and something in their environment that triggers those genes.
Children with ASD have trouble relating to other people. They have trouble making eye contact. They often withdraw into themselves. They may seem uninterested in relating to family members.
But some children with ASD may love to keep talking with family members, friends, and even strangers about a topic they are obsessed with. The problem is that they may talk about it too long. Or they may talk only about that one subject. This can push other people away.
If you are a parent or grandparent of a child with ASD, it can be heartbreaking if you feel like you just can’t connect with him or her. But learning more about these disorders and what has helped others can help you and your relationship.
What To Do If Your Child Is Diagnosed
If your child receives an autism diagnosis, you might feel overwhelmed and have many questions racing through your mind: Will my child be OK? How will we cope? What does this mean for their future? Where do I even start?
Talk with your pediatrician about services that are available to help autistic kids develop and sharpen their communication, social, motor, and academic skills.
The key is to get educated, find support as early as possible, and have compassion not just for your child but also for yourself.
You also might:
Autism Screening And Diagnosis
It can be hard to get a definite diagnosis of autism. Your doctor will focus on behavior and development.
For children, diagnosis usually takes two steps.
- A developmental screening will tell your doctor whether your child is on track with basic skills like learning, speaking, behavior, and moving. Experts suggest that children be screened for these developmental delays during their regular checkups at 9 months, 18 months, and 24 or 30 months of age. Children are routinely checked specifically for autism at their 18-month and 24-month checkups.
- If your child shows signs of a problem on these screenings, theyâll need a more complete evaluation. This might include hearing and vision tests or genetic tests. Your doctor might want to bring in someone who specializes in autism disorders, like a developmental pediatrician or a child psychologist. Some psychologists can also give a test called the Autism Diagnostic Observation Schedule .
If you werenât diagnosed with autism as a child but notice yourself showing signs or symptoms, talk to your doctor.
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 . 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.
What To Do If Youre Worried
If your child is developmentally delayed, or if youve observed other red flags for autism, schedule an appointment with your pediatrician right away. In fact, its a good idea to have your child screened by a doctor even if he or she is hitting the developmental milestones on schedule. The American Academy of Pediatrics recommends that all children receive routine developmental screenings, as well as specific screenings for autism at 9, 18, and 30 months of age.
Schedule an autism screening. A number of specialized screening tools have been developed to identify children at risk for autism. Most of these screening tools are quick and straightforward, consisting of yes-or-no questions or a checklist of symptoms. Your pediatrician should also get your feedback regarding your childs behavior.
Funding For Assessment And Diagnosis Of Autism
You can have your child assessed for autism through the public or the private health system.
Public assessment services are funded through your state or territory government and are often run through hospitals or health services. These are offered at no cost to families, but many have long waiting lists.
The other option is to be assessed privately. A paediatrician can refer you to another professional to confirm the diagnosis. A private assessment can be expensive, and there might also be a waiting list.
You can claim a rebate from Medicare to help with some of the costs of the assessment sessions, but theres still an out-of-pocket expense, and youll need to cover the full cost of any more assessment sessions. You might also be able to claim some of the fees through your private health fund, if you have one.
When youre deciding whether to go through the public or private system for assessment, it can help to ask:
- Is there a waiting list? How long will it take before we get our first appointment?
- How long will it take until the assessment is finished and we get the results?
- How many sessions will you need with me and my child?
- Can I claim anything back from Medicare?
- Can you give me an estimate of my out-of-pocket expenses?
- Does it cost extra for the report about my childs results?
Restricted Or Repetitive Behaviors Or Interests
People with ASD have behaviors or interests that can seem unusual. These behaviors or interests set ASD apart from conditions defined by only problems with social communication and interaction.
Examples of restricted or repetitive interests and behaviors related to ASD can include:
- Lines up toys or other objects and gets upset when order is changed
- Repeats words or phrases over and over
- Plays with toys the same way every time
- Is focused on parts of objects
- Gets upset by minor changes
- Has obsessive interests
- Flaps hands, rocks body, or spins self in circles
- Has unusual reactions to the way things sound, smell, taste, look, or feel
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.
How To Test A Child For Autism
You may ask your childs healthcare provider to periodically check your child for signs of autism with a developmental screening test. A screening test alone will not result in a diagnosis but can indicate if your child should see a specialist. A developmental pediatrician, child psychologist or psychiatrist, pediatric neurologist, speech-language pathologist, occupational therapist, or other specialist can conduct a formal developmental evaluation.
What Is The Difference Between Autism And Adhd
Autism and ADHD are sometimes confused with one another.
Children with an ADHD diagnosis consistently have issues with fidgeting, concentrating, and maintaining eye contact with others. These symptoms are also seen in some autistic people.
Despite some similarities, ADHD isnt considered a spectrum disorder. One major difference between the two is that people with ADHD dont tend to lack socio-communicative skills.
If you think your child may be hyperactive, talk with their doctor about possible ADHD testing. Getting a clear diagnosis is essential to ensure that your child is receiving the right treatment.
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.
Are Siblings At Greater Risk For Autism Spectrum Disorder
The truth is that genetics do play a role in autism. When one child is diagnosed with ASD, the next child to come along has about a 20% greater risk of developing autism than normal. When the first two children in a family have both been diagnosed with ASD, the third child has about a 32% greater risk of developing ASD.
Endogenous Opiate Precursor Theory
In 1979, Jaak Panksepp proposed a connection between autism and opiates, noting that injections of minute quantities of opiates in young laboratory animals induce symptoms similar to those observed among autistic children. The possibility of a relationship between autism and the consumption of gluten and casein was first articulated by Kalle Reichelt in 1991.
Opiate theory hypothesizes that autism is the result of a metabolic disorder in which opioid peptides gliadorphin and casomorphin, produced through metabolism of gluten and casein , pass through an abnormally permeable intestinal wall and then proceed to exert an effect on neurotransmission through binding with opioid receptors. It has been postulated that the resulting excess of opioids affects brain maturation, and causes autistic symptoms, including behavioural difficulties, attention problems, and alterations in communicative capacity and social and cognitive functioning.
Who Resolution On Autism Spectrum Disorders
In May 2014, the Sixty-seventh World Health Assembly adopted a resolution entitled “Comprehensive and coordinated efforts for the management of autism spectrum disorders ,” which was supported by more than 60 countries.
The resolution urges WHO to collaborate with Member States and partner agencies to strengthen national capacities to address ASD and other developmental disabilities.
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
Turning 22 With Autism
The relative lack of information for and about adults on the spectrum means that a lot of parents suddenly find themselves scrambling when their childnow a young adultreaches the magical age of 22.
That’s because, on their 22nd birthday, people with autism suddenly lose their entitlement to services under the Individuals with Disabilities Education Act and enter the much chancier world of adult services.
While the IDEA actually requires schools to offer “free and appropriate education” to all children, there is no such requirement for adults. As a result, funding and programming for adults may or may not be available at any given time.
Should I Get My Child Assessed
You should get your child assessed for ASD if:
- you have concerns
- you notice any signs or symptoms
- your child has a close relative with ASD
Normally, your health care provider will test your child first. You can help your health care provider understand the unusual behaviour you see by:
- taking photographs
- maintaining logs or diaries
- capturing these behaviours on video
If there are concerns, then your health care provider should refer you to a specialist for more tests. A specialist is the best person to help diagnose your child.
Variability In Adults With Autism
Not all adults with autism are alike.
- Some adults with autism have successful careers in demanding fields such as information technology, robotics, and video game production.
- Some work part-time while also taking advantage of day programs and resources.
- Some are unable to function in the workplace and spend their days in sheltered settings.
- Some adults on the spectrum are happily married or partnered.
- Others have romantic friendships.
- A significant number are unable to form meaningful, reciprocal relationships with peers.
These vast differences make it just as tough to define or provide services for adults with autism as for children on the spectrum.
What To Do Next After Receiving An Adult Autism Diagnosis
I have written about what to do after receiving an adult diagnosis so please consult this article for guidance. There is also the decision on who should be told about the diagnosis. Ive written an in-depth blog about that.
If you want to be in a support group, contact your local autism society to see what they offer for adults. There are also on-line support options available. Here is a list of the groups on Facebook.
How Can I Help A Friend With Autism
People with ASD have a very wide array of signs and symptoms. Some people with ASD do not feel that they have a disorder and don’t want to change. They’re proud of who they are and they want to be accepted, even though they may have different strengths and weaknesses than most other people.
All people deserve respect. But people with ASD may be teased, bullied, or left out because they’re different. Bullying and teasing are never the right way to treat other people, but it may be hard to be a friend with someone who has ASD.
People with ASD often don’t understand playful jokes or sarcasm. You may need to be very clear and factual when you communicate with someone who has ASD.
Try to be patient and kind. Remember how hard it might be for the person with ASD to understand how to be a friend. Stand up for classmates who are bullied. Tell adults, so they can help protect kids who are bullied.
What Is Autism Spectrum Disorder
Autism spectrum disorder is a developmental disability that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.
A diagnosis of ASD now includes several conditions that used to be diagnosed separately: autistic disorder, pervasive developmental disorder not otherwise specified , and Asperger syndrome. These conditions are now all called autism spectrum disorder.
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
What Causes Autism Spectrum Disorder
No one knows exactly what causes ASD. It probably has something to do with DNA the genes passed down from your parents and other things, like infections or toxins that change the way the brain develops. Problems during pregnancy and around the time of birth raise the chance of getting autism.
Vaccines do not cause autism.
What Research Is Being Done
The mission of the National Institute of Neurological Disorders and Stroke is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease. The NINDS is a component of the National Institutes of Health , the leading supporter of biomedical research in the world. NINDS and several other NIH Institutes and Centers support research on autism spectrum disorder.
Nearly 20 years ago the formed the Autism Coordinating Committee to enhance the quality, pace, and coordination of efforts at the NIH to find a cure for autism. The NIH/ACC has been instrumental in promoting research to understand and advance ASD. The NIH/ACC also participates in the broader Federal Interagency Autism Coordinating Committee , composed of representatives from various U.S. Department of Health and Human Services agencies, the Department of Education, and other governmental organizations, as well as public members, including individuals with ASD and representatives of patient advocacy organizations. One responsibility of the IACC is to develop a strategic plan for ASD research, which guides research programs supported by and other participating organizations.
Living With An Autism Diagnosis
Receiving an ASD diagnosis as an adult could mean a greater understanding of yourself and how you relate to the world. And it can help you learn how to better work with your strengths and strengthen areas of your life that are challenging.
Getting diagnosed can help you gain a different perspective on your childhood. It can also help those around you to understand and empathize more with your unique characteristics.
Better understanding the set of challenges you face can help you find new and inventive ways to work with or around those challenges. You can also work with your clinician and your family to seek treatments that may be right for you.
Varied Availability Of Services
Adults with autism are entitled to nothing but are likely to receive at least some level of support. If you live in some states, you’ll have little trouble accessing services and funding for adults with autism.
If you live in other states, you’re out of luck. According to Centers for Medicare & Medicaid Services , thes states offer the least generous programs and services:
- Idaho
- Colorado
- Vermont
Of course, the definition of “services and funding” varies depending upon need. For example, Medicaid doesn’t provide vocational training or supportservices that would be particularly useful to higher functioning adults.
Medicaid may or may not be a source of funding for housing, day programs, and other services.
One excellent, updated source of information about state-by-state offerings is Easter Seals. While they do focus quite a bit on children, they also include a wide range of detailed information about resources and services for all ages.
Autisms Genetic Risk Factors
Research tells us that autism tends to run in families. Changes in certain genes increase the risk that a child will develop autism. If a parent carries one or more of these gene changes, they may get passed to a child . Other times, these genetic changes arise spontaneously in an early embryo or the sperm and/or egg that combine to create the embryo. Again, the majority of these gene changes do not cause autism by themselves. They simply increase risk for the disorder
What Does An Autism Diagnosis Mean For My Child
An autism diagnosis can result in some beneficial effects, but also comes with associated risks, disadvantages, and contraindications. Once your child is diagnosed with autism, you can expect your doctor to devise a specific treatment plan, comprised of therapy and/or medication to help your child function more easily in daily life. You can also seek specific guidance and support for your child to thrive at school. Despite these benefits, a diagnosis of autism also come with the risk of social stigmatization for the child. There is also a range of physical and mental-health conditions that frequently accompany autism including but not limited to: gastrointestinal problems, epilepsy, ADHD, anxiety, and depression.