How Adults Discover They May Be On The Autism Spectrum
A recent CDC study reported that 2.2% of American adults are on the autism spectrum. This information was based on projections of how many children had been diagnosed with autism or a related condition that the DSM-5 now considers autism.
There may be more adults with autism who are diagnosed much later in life. However, there are few screening tools that are designed specifically for adults, so many medical professionals rely on talking about childhood experiences or on information their client gathered while self-diagnosing, which the medical professional can expand on.
If you are an adult with autism, you might have:
- Been diagnosed with a mental or behavioral health disorder, or an intellectual disability, as a child but now understand those symptoms as closer to autism.
- Felt socially isolated, different, or alone without understanding how to solve the problem.
- Read about autism and recognized symptoms in yourself or feel acutely that your experience is being described.
- A child in your family who has been diagnosed with autism, and you recognize the symptoms in yourself based on their diagnosis.
While you may suspect you have autism, you cant officially diagnose yourself. You need a doctor to assess you and make an official diagnosis.
Gaining The Understanding Of Others
Many people suffer the consequences of being constantly misunderstood. Often the fact that someone has Asperger’s syndrome can lead to teasing, bullying and social isolation. When the people close to you are able to understand that there is a reason for your difficulties it is much easier for them to empathize with your position.
Diagnostic Criteria For 29900 Autism Spectrum Disorder
To meet diagnostic criteria for ASD according to DSM-5, a child must have persistent deficits in each of three areas of social communication and interaction plus at least two of four types of restricted, repetitive behaviors .
Specify current severity:
Severity is based on social communication impairments and restricted, repetitive patterns of behavior.
You May Like: What Is The Life Expectancy Of People With Autism
Undiagnosed Life Can Be Frustrating And Depressing
The tests for autism, Beversdorf says, are designed for children and do not always transfer well to adults. Its tricky, because this is a new area of study, and there are only a handful of things out there in regard to adult diagnosis and management, he says.
He adds, There is some evidence that a large proportion of increased diagnoses among adults is not an indication of increased incidence, but to a large proportion, one of recognition. When ASD is unrecognized, individuals lives can be frustrating and depressing, and they dont understand why and thats hard.
That was the case with Peter Street, who was diagnosed with ASD at 67. He says his reaction to his diagnosis was one of enormous relief because all my life suddenly made sense. Street lives in the Lancashire town of Wigan, in England, and his story was reported in a 2016 article by John Harris in The Guardian, an international publication.
In the article, the National Autistic Society estimates that some 700,000 people are living with autism in the United Kingdom, or more than one in every 100. The British Health Services statistics may not apply to the U.S., Beversdorf says, but probably the number of people living here with autism is not a small percentage. Its not infrequent that I stumble across someone who has never been assessed.
The Centers for Disease Control and Prevention estimates that more than 3.5 million Americans live with ASD.
Autism In Adults: Being Diagnosed Late In Life Is Challenging
With the adjustments in both the DSM-5 and its predecessor, the DSM-IV, to the definition of autism, more people are also being diagnosed with this developmental condition later in life.
Typically, people who are on the autism spectrum but do not receive a diagnosis until adulthood have milder symptoms. They may feel like they do not belong; they may wonder why they struggle to maintain friendships or relationships; or they may first receive a diagnosis of a co-occurring condition like depression or anxiety, which developed because of social isolation or communication struggles with others.
Testing children for signs of autism is a much more established practice, so many adults who are on the autism spectrum end up self-diagnosing themselves. Then, they seek help from a doctor or therapist who can provide an actual diagnosis. A medical diagnosis is a vital step to getting the right type of behavior therapy to understand and manage symptoms.
You May Like: Do Autistic Toddlers Dance
My Neurodivergence Is Part Of Who I Am Not A Handicap
People often want to call autism a disorder, a handicap, or maybe even a disease.
I read something once by an anti-vaxxer, saying that vaccines could cause autism which, in turn, could prevent your child from becoming all that they could be.
An interesting turn of phrase, all that they could be. As if being autistic prevents you from being whole or yourself.
Neurodivergence, or autism, isnt something thats separate from who I am. Its just one of the things that makes me who I am.
Im whole and complete including my neurodivergence not despite it. I actually think that without it, I wouldnt be completely me.
Usually, people dont think Im on the spectrum at all, mainly because it doesnt always look the way they think it should.
Plus, Im really good at altering my behavior to mimic conventional social norms even when it feels odd to me or is contrary to what I actually want to do or say. Many autistic people are.
Pretty much every single thing I do when in public is so nobody thinks Im weird. Ill probably always alter my behavior, because its easier over time. Because if I didnt, I likely wouldnt have the career or life that I have now.
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
Also Check: What Does The Puzzle Piece Mean
Current Diagnostic Tests For Autism In Adults
There are several tests that can help clinicians diagnose autism in adults.
- ADOS 2 Module 4: The Autism Diagnostic Observation Schedule, 2nd Edition, Module 4 is specifically used to diagnose autism in verbally fluent adults. There are several questions regarding common symptoms of autism, including those related to language and communication, reciprocal social interactions, and restricted or repetitive behaviors. The clinician will score each of these areas 1 to 3, and then provide a diagnosis based on the total score.
- ADI-R: This is a survey typically used to diagnose children, based on interviewing their parents. However, some clinicians may use it to diagnose adults with autism, using the same interview questions but instead asking about their childhood experiences.
- 3Di Adult:The Developmental, Dimensional, and Diagnostic Interview Adult Version was developed specifically to help clinicians understand signs of autism in their adult clients. It has shown higher sensitivity and accuracy than other tests.
- AFQ: The Actions and Feelings Questionnaire focuses on differences in motor cognition. This involves how humans process and understand their physical movements, which can help adults relate to the world. This includes social processing, which can help identify adults who are on the autism spectrum.
- RAADS-14: The Ritvo Autism and Asperger Diagnostic Scale-Revised is an 80-question survey to detect autism. The RAADS-14 is the streamlined 14-question version.
Different Types Of Autism In Adults
Since Autism is a spectrum disorder, this means that there is a wide range of symptoms that people may experience.
Throughout the years, the definition of autism in the Diagnostic and Statistical Manual of Mental Disorders has changed.
In 2013, Aspergers syndrome, childhood disintegrative syndrome, pervasive developmental disorder-not otherwise specified , autistic disorder, and Rett syndrome have been included under the umbrella term of Autism Spectrum Disorder.
These terms are not diagnosis now. They are used as descriptions. They help clinicians and parents better understand the status of their loved one with autism.
The terms may cause confusion as they are difficult to define. Practitioners selected different diagnoses for the same patients.
Therefore, certain terms like severe autism, mild autism and high functioning autism are used to clarify the diagnosis.
What Kind Of Testing Is Involved
In order to ensure we have a complete understanding of the strengths, weaknesses, and needs of a person with ASD, we may recommend a variety of assessment methods, including interviews and observation as well as cognitive, adaptive, emotional/behavior/personality, and achievement testing. We will use a personalized testing battery to help determine whether an individual will meet the diagnostic criteria for ASD. We work with patients and parents to gather all of the necessary information to make an informed and accurate diagnosis. We will also work with you to create a practical plan for moving forward with goals to improve a childs learning experience, and help patients of all ages achieve their personal, professional, and educational goals.
If you are looking for online autism testing, please click here.
Evaluation Based On Observation
Parents, family members or other caregivers of children on the autism spectrum;are often the first to notice delays in the usual childhood developmental milestones such as speech, eye contact, play with other children or social interactions.
Sometimes autism goes unnoticed or undiagnosed in both children and adults, especially when symptoms are mild or when the person has other disabilities or health problems. In some cases, other medical conditions such as are present, making autism difficult to recognize. As a result, ASDs may go undetected for years and may only be diagnosed during an educational impasse or a life crisis which puts a person in contact with professionals able to recognize the disorder.
Medical professionals use the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders to evaluate autism spectrum disorder and the related social communication disorder . ASDs are diagnosed based on a combination of specific behaviours, communication delays and/or developmental disabilities.
Don’t Miss: Is Freddie Highmore Really Autistic
How Does Treatment Help
You’ll understand your mind, your tendencies, and your habits with insights from your ASD diagnosis. Your doctor may also suggest treatment. Autism is a lifelong condition, but therapy could give you tools you’ll need to succeed in a world that is not often made for people with autism.;
For example, Autism Speaks says about half of 25-year-old adults with autism have never held a paying job. Those who do work often take on part-time positions with low salaries and no benefits. They may try to put together a life while living below the poverty line.;
Even some people with moderate forms of ASD which are more likely to “pass” and elude diagnosis have severe struggles, researchers say. Most don’t have partners, and they have limited social opportunities. Many live isolated lives.;But they don’t have to live this way.
Autism is a lifelong disorder, but treatment can help. Applied behavior analysis , the standard autism treatment protocol, can be helpful for adults.
Autism Speaks explains that ABA programs can help to:
- Build communication skills.
- Boost social ability.
- Limit problem behaviors.
You will meet with an ABA provider to discuss your life, your limitations, and your goals. Together, you’ll determine what skills you want to improve, and you’ll pinpoint habits you’d like to break.;
Then, you’ll practice together. Your therapist breaks your goals down into small pieces you’ll run through as drills until they become habitual for you.;
How Do Professionals Make An Autism Assessment
Assessment tools often use a series of questions, in-person observations and interactions to support a professional diagnosis of autism.
Depending on your needs, health professionals will gather information around your medical and health history as well as the following:
- Developmental and educational history: You will be asked about your development as a child and teenager. This may cover a wide range of developmental areas.
- Autism-specific signs and/or symptoms: You will be asked about behaviours relating to social communication and interaction and restricted, repetitive patterns of behaviour.
- Other relevant behaviours, signs and/or symptoms: You will be asked about the presence of any co-occurring condition and/or differential diagnosis.
Quick tip: Sometimes, it may be helpful to invite someone who knew you as a child to your appointment perhaps an older sibling, childhood friend or a parent. They may be able to offer important information about your early childhood that you dont remember. However, this is entirely up to you.
Quick tip:You know yourself best. If your GP or other health professional doesnt feel you warrant further assessment but you feel you do get a second opinion.
Interventions For Adults With Autism
Clinicians treat autism differently in adults than they do in children. In part this is because other mental health conditions like anxiety or OCD may also be playing a role in the persons life, and must be addressed. Also there can be other concerns to treat at the same time, such as job or relationship difficulties.
A formal diagnosis opens the doors to resources and autism-related services, like vocational training and job placement. These programs vary by state and may not be available everywhere in the country, however.
The 2016 study authors noted that, service provision for adults with ASD is in its infancy. There is a lack of health services research for adults with ASD, including identification of comorbid health difficulties, rigorous treatment trials , development of new pharmacotherapies, investigation of transition and aging across the lifespan, and consideration of sex differences and the views of people with ASD.
Although this is discouraging, todays children with ASD are aging, so things will change to accommodate them and well see more adult services in the coming years. Meanwhile, in addition to the programs that are currently in place, adults have access to professional treatment and things like books, online forums, and in-person support groups.
While ASD cant be cured, it can be successfully managed. Behavioral interventions and learning targeted skills can reduce the challenges that those with autism may face throughout their lives.
What Are Some Of The Benefits Of Getting A Diagnosis
- Getting a professional diagnosis may help you to receive any appropriate funding, support and help you might need.
- Your family, friends and work colleagues may have a better understanding of you and your needs and it may allow them to support you more effectively.
- You may have a greater sense of self-identify if you understand yourself and the spectrum better.
- You may have a better understanding of your experiences as a child or adolescent.
- You may have increased confidence knowing you are part of a larger group of adults that may be like-minded.
Some adults find that by having a better understanding of the challenges associated with autism, they can use their strengths and develop strategies to support these.
Fast fact: Did you know that people on the spectrum commonly show character strengths such as loyalty, kindness, honesty and a lack of judgement?
Also Check: Printable Visual Aids For Autism
Getting An Autism Diagnosis For Adults
The most interesting people youll find are ones that dont fit into your average cardboard box. Theyll make what they need, theyll make their own boxes.
Dr Temple Grandin, Autism Advocate
So you want to be assessed for autism?
There are a number of ways that you may have arrived at this decision. It may be that your child has been diagnosed with autism and you recognise a few behavioural similarities. Perhaps your significant other or a close friend has suggested that you are on the spectrum? Or perhaps youve had the feeling of being different and have long suspected you might be on the spectrum?
Whatever the reason, the following page will help you to prepare for an assessment, and give you more information about what to expect.