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.
How Is Autism Diagnosed In Children
In children, autism is diagnosed with an autism evaluation conducted by a psychologist, developmental pediatrician, or pediatric neurologist. Because there’s no single imaging scan or blood test that can diagnose the condition, evaluations include several different diagnostic tools:
- IQ tests
- Observation tools, such as Autism Diagnostic Observation Scale
Repetitive Interests Activities And Behaviors
At least one of the following symptoms accompanied a diagnosis of Aspergers:
- strong enthusiasm for at least one restricted, stereotyped interest pattern thats unusually focused or intense
- rigid dedication to specific rituals or routines that dont appear to serve a purpose
- repetitive, physical habits, like finger or hand flapping
- constant preoccupation with the individual parts of objects
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Getting Started: Introducing Your Child To His Or Her Diagnosis Of Autism
;Marci Wheeler, MSW
Many parents are fearful that labeling their child as having an autism spectrum disorder will make him or her feel broken, or that they may use their label as an excuse to give up and not try. Adults on the autism spectrum have found the opposite to be true. Giving your child information on the nature of his/her differences will give them a better understanding and the motivation that is needed to drive through challenges.
Discussing an autism spectrum diagnosis with your child is an important issue and one for which many parents seek advice. This article will focus on aspects of explaining your childs diagnosis to him or her, and provide resources that can assist and guide you.
Have An Autism Assessment
An autism assessment is where a team of autism specialists check if you or your child are autistic.
An assessment team may:
- ask about any problems you or your child are having
- watch how you or your child interact with other people
- speak to people who know you or your child well, such as family, friends, your GP or your child’s teachers
At the end of the assessment, you’ll be given a report saying if you or your child are autistic.
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How Is Autism Treated
There is no cure for ASD. Therapies and behavioral interventions are designed to remedy specific symptoms and can substantially improve those symptoms. The ideal treatment plan coordinates therapies and interventions that meet the specific needs of the individual. Most health care professionals agree that the earlier the intervention, the better.
Educational/behavioral interventions: Early behavioral/educational interventions have been very successful in many children with ASD. In these interventions therapists use highly structured and intensive skill-oriented training sessions to help children develop social and language skills, such as applied behavioral analysis, which encourages positive behaviors and discourages negative ones. In addition, family counseling for the parents and siblings of children with ASD often helps families cope with the particular challenges of living with a child with ASD.
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.
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How Do You Get Autism
Lets step back a little while I explain how you do you get autism. Autism occurs, as specialists explain, due to unexplained processes in the brain during its initial development cycles. Autism is believed to start early as an underlying process that may not show signs or symptoms until your child reaches the age of three. Check out some of these stats below:
Fig 2: Autism Fact Sheet Demonstrating a staggering growth rate of Autism over the years!This is what Sue, a social scientist from a reputed university in Texas, had to say about how do you get autism: To look at it in simple;terms, autism is like arthritis. Arthritis grows as the joints decompose;over our lifetime causing inflammation;that;leads to pain as we advance in age. Just as;you dont suddenly;get arthritis, similarly you dont;just get Autism one fine morning. It has most likely been existing for a while, but signs of autism would only emerge with age. The only difference here being that arthritis symptoms grow over the lifetime of a person while most Autism symptoms are usually pretty evident;by the time a child is 6 to 8 years old
Neurologists;believe that autism may trigger during infancy due to complications during pregnancy or birth. Usually, when something disrupts the functioning process of the brain, over a period of time the brain tries to compensate for these disruptions.
Fig 3Fig 4Fig 5Fig 6
How Is Autism Spectrum Disorder Treated
ASD is most often a life-long condition. Both children and adults with autism benefit from behavioral interventions or therapies that can teach new skills to address the core deficits of autism and to reduce the core symptoms. Every child and adult with autism is unique. For this reason, the treatment plan is individualized to meet specific needs. It is best to begin interventions as soon as possible, so the benefits of therapy can continue on throughout the course of life.
Many people with ASD often have additional medical conditions, such as gastrointestinal and feeding issues, seizures and sleep disturbances. Treatment can involve behavioral therapy, medications or both.
Early intensive behavioral treatments involves the entire family and possibly a team of professionals. As your child ages and develops, treatment may be modified to cater to their specific needs.
During adolescence, children benefit from transition services that promote skills of independence essential in adulthood. The focus at that point is on employment opportunities and job skill training.
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Autism Diagnostic Observation Schedule
ADOS is a tool used to assess social interactions and communications in people with ASD or might be at risk of developing the condition. The ADOS can be used to diagnose the condition in both children and adults. Its also a great tool for people at any stage of ASD. People with severe ASD who might not communicate verbally at all will benefit from the ADOS assessment systems.
What Increases The Risk Of Asd
ASD tends to run in families, so experts think it may be something that you inherit. Scientists are trying to find out exactly which genes may be responsible for passing down ASD in families. ASD tends to occur more often in people who have certain genetic conditions. These may include fragile X syndrome and tuberous sclerosis.
Some things increase the chance that you’ll have a baby with ASD. These things are called risk factors.
The risk of having a baby with ASD is higher if either birth parent:
- Is at an older age.
- Has another child who has ASD.
- Has a family history of learning problems.
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Talking With Other People About Your Childs Autism Diagnosis
Talking about your childs autism diagnosis with other people might feel strange or hard at first. You might wonder who to tell and what to say. These decisions are up to you and your child but getting things out in the open can really help you and your child. It can also help others to better understand your child.
How To Test For Adult Autism
There are several tests to diagnose autism in adults, but there is no single, accepted clinical approach to diagnosing the disorder in adults. Instead, many adults must go to their doctor or therapist after reading others personal accounts of autism and learning more about the symptoms of autism.
People who do not get the right diagnosis until later in life may have milder symptoms than those who are diagnosed as children. They will still struggle with communication, socializing, cognition, and motor skills. As a result, they will still benefit from behavior therapy.
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Getting A Diagnosis Children < 18 Years
If you have concerns about your childs development, its important to raise them with a qualified professional, including a General Practitioner who may refer your child for an autism assessment.
Alternatively, if you have concerns about your childs development, and think that they may have autism, you can refer them directly to a number of professionals that can assess for autism.
Social Communication / Interaction Behaviors May Include:
- Making little or inconsistent eye contact
- Tending not to look at or listen to people
- Rarely sharing enjoyment of objects or activities by pointing or showing things to others
- Failing to, or being slow to, respond to someone calling their name or to other verbal attempts to gain attention
- Having difficulties with the back and forth of conversation
- Often talking at length about a favorite subject without noticing that others are not interested or without giving others a chance to respond
- Having facial expressions, movements, and gestures that do not match what is being said
- Having an unusual tone of voice that may sound sing-song or flat and robot-like
- Having trouble understanding another persons point of view or being unable to predict or understand other peoples actions
Is There A Test For Asd In Adults
Clinicians have developed different tests that can help diagnose ASD in adults. These include diagnostic tests such as ADOS 2 Module 4, ADI-R, and 3Di Adult.
However, it is not clear how reliable these tests are for adults. The reasons for this include:
- Researchers who look at the reliability of ASD tests often use a small number of study participants.
- Not many research studies on testing for adult ASD include enough participants from historically underserved groups, such as People of Color or people who are LGBTQIA+. This means the results of studies looking at ASD testing methods may not represent a true population of autistic adults.
- Many clinicians may not be familiar with the signs of ASD in adulthood. This is especially true if the patientâs symptoms are not severe or if the patient also has other conditions, for example, anxiety.
Autistic people may have of co-occurring conditions, such as anxiety or depression, than those in the general population.
When The Diagnosis Is Not Autism
Other disorders, such as obsessive-compulsive disorder, social communication disorder, or social anxiety can sometimes look like autism. If doctors do pick up on these other disorders, they can recommend appropriate therapy and/or medication.
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Conducting An Adult Autism Evaluation
Because of these limitations, the evaluation of an adult has to lean heavily on direct observation. This will be in the context of a discussion between the clinician and the patient about current challenges in the areas of social interaction and communication, sensory issues and restricted interests or repetitive behaviors.
However, some higher functioning adults on the autism spectrum become very resourceful in developing strategies to compensate for their disabilities. Clearly, this makes a diagnosis based on observation much more difficult.;
But diagnosis remains important even when for those who have learned to hide their symptoms because they may still struggle in their everyday lives and interactions.
In these cases, its important to explore the lifelong presence of related developmental issues.; In particular, its critical to get detailed information about early childhood.;Sometimes this clearly reveals an early development that fits with a diagnosis of ASD.
While our diagnostic checklists are designed for children, I find that they can be useful as we explore an adults childhood development.;In particular, I sometimes interview older relatives such as parents who can recall the patients early childhood in some detail.;Often they can answer questions from diagnostic checklists and, so, inform a possible diagnosis.;Clearly, this is not possible when there isnt an older relative available for a reliable report.
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.
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Emotional And Behavioral Difficulties
- You have trouble regulating your emotions and your responses to them.
- Changes in routines and expectations cause outbursts or meltdowns.
- When something unexpected happens, you respond with an emotional meltdown.
- You get upset when your things are moved or rearranged.
- You have rigid routines, schedules, and daily patterns that must be maintained no matter what.
- You have repetitive behaviors and rituals.
- You make noises in places where quiet is expected.
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.
From Finding The Right Clinician To Diagnostic Tools And Parent Interviews There Are Many Steps
An autism diagnosis covers a spectrum of children with a wide range of skills and impairments. Because of this, the developmental disorder can look very different from child to child. Many experts who diagnose and treat children with autism like to say, If youve seen one child with autism, youve seen one child with autism.
The diversity of autism spectrum disorder can make it difficult to correctly diagnose. Sometimes autistic children are mistakenly diagnosed with a different disorder, like ADHD, or are told that nothing is wrong. Other times kids are diagnosed as autistic when they actually arent.
Thats why its important for parents to know what the components of an autism diagnosis should be: What kinds of information should a clinician whos evaluating your child be considering? How can you know whether your clinician is following best practices in doing an autism assessment?
What Are The Signs Of Autism Spectrum Disorder
Signs of ASD range from mild to severely disabling, and every person is different. The following signs are considered to be red flags that indicate your young child may be at risk for autism. If your child shows any of the following signs, please get in touch with your childs healthcare provider to discuss a referral for an autism evaluation.
The signs include the following:
- Your child doesnt respond to their name being called at all or responds inconsistently.
- Your child doesnt smile widely or make warm, joyful expressions by the age of 6 months.
- Your child doesnt engage in smiling, making sounds and making faces with you or other people by the age of 9 months.
- Your child doesnt babble by 12 months.
- No back-and-forth gestures such as showing, pointing, reaching or waving by 12 months.
- No words by 16 months.
- No meaningful, two-word phrases by 24 months.
- Any loss of speech, babbling or social skills at any age.
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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.
Working With An Autism Specialist
Screeners are often given by pediatricians, but if there are red flags that indicate further evaluation would be appropriate, it is best to work with someone who has both experience and expertise in diagnosing children on the autism spectrum. Youre not going to go to a doctor for a heart transplant whos done two or three, right? says Dr. Epstein. Its the same with autism. You want someone whos seen hundreds of kids with all different stripes typical children, intellectually disabled children, autistic children and knows what to look for. Academic and medical centers are often good places to find experienced diagnosticians.
Parents can ask some questions to try to gauge a potential providers experience. For example:
- Whats your training and experience?
- Have you had specific training in assessment of people on the spectrum? How much?
- What do you plan to do as part of this assessment?
- Will you be contacting my childs teacher or pediatrician?
Try to find a practitioner who is able to answer your questions readily and makes you feel comfortable.;A clinician who takes your concerns seriously and is experienced in assessing autism spectrum disorder is essential to getting an accurate diagnosis.
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