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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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.
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.
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Restrictive / Repetitive Behaviors May Include:
- Repeating certain behaviors or having unusual behaviors. For example, repeating words or phrases, a behavior called echolalia
- Having a lasting intense interest in certain topics, such as numbers, details, or facts
- Having overly focused interests, such as with moving objects or parts of objects
- Getting upset by slight changes in a routine
- Being more or less sensitive than other people to sensory input, such as light, noise, clothing, or temperature
People with ASD may also experience sleep problems and irritability. Although people with ASD experience many challenges, they may also have many strengths, including:
- Being able to learn things in detail and remember information for long periods of time
- Being strong visual and auditory learners
- Excelling in math, science, music, or art
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.
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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.
What Does Research On Autism Tell Us
A recent study focused on this question. Researchers looked at more than 1,200 toddlers who had at least two developmental evaluations between 12 and 36 months. Less than 2% of the toddlers initially thought to have autism were subsequently thought to have normal development. And on the flip side, 24% initially thought to not have autism were then later diagnosed as having it. So while the picture is not always clear at first, once the diagnosis is made, it usually sticks.
At what age can the diagnosis be reliably made? At 12 to 13 months the diagnostic stability of the autism diagnosis meaning the degree to which it was certain and stuck was about 50%. This went up to 80% by 14 months, and 83% by 16 months. This makes sense if you think about the development of a toddler. At 12 months, they are just starting to say words, respond to commands, and interact with others. So a child who isnt reliably doing those things would be cut some slack. But by 18 months, all those skills should be solidly in place, raising alarm bells about a child who doesnt have them.
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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?
Box 2 Components Of Maaadapted From The Napc
ASDspecific developmental history by an experienced member of the team with recognised ASD training
Observational assessments includes focused observations taken across more than one setting
Cognitive assessment, including an individual’s unique profile of skills/difficulties on subscales
Communication, speech and language assessment
Behaviour and mental health assessment in comorbid neurodevelopmental disorders and psychiatric disorders
Family assessment, undertaken by the key worker to identify strengths and needs using the Framework for the Assessment of Children in Need and their Families
A physical examination and medical investigations as guided by clinical presentation
Other assessments, including physiotherapy and occupational therapy, should be available to identify sensory needs and problems, motor planning and coordination difficulties, and selfcare problems
The choice of components of the MAA will depend on clinical presentation. It is important that no one component is used in isolation to reach a diagnosis. Assessments are likely to involve a series of appointments with more than one professional across several settings. These contributions will need to be coordinated, discussed, and the proposed diagnostic formulation and treatment plan agreed with the parents/family.
Finally, he or she may be involved in undertaking or coordinating standardised assessments . This will be determined by the individual skills of the paediatrician and other team members.
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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
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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Which Treatment Strategies May Help Children With Autism
The main treatment for autism is called applied behavioral analysis . This is a behavioral program that breaks actions and behaviors down into small steps. It encourages positive behaviors and discourages negative behaviors. Other treatments include occupational therapy, sensory integration therapy, and strategies to improve communication, such as using pictures that children can point at to let caregivers know what they want.
Heres the thing: ABA and the other treatments are helpful for children with developmental problems, no matter what their cause. There is no downside to doing them even if the child ultimately is found to have a different problem or no problem at all. They are good for the child with autism, the child with a language disability, or a late bloomer. Yes, its hard for parents to hear a diagnosis of autism. But there is much reason for hope when it comes to autism, and we should never waste time when a child needs help.
The CDCs Act Early campaign has a whole host of resources to help parents and caregivers know if a child is developing normally, or if there might be a problem. If you think there is a problem, ask for help. You have nothing to lose, and everything to gain.
Follow me on Twitter;@drClaire
How Parents Can Spot The Warning Signs
As a parent, youre in the best position to spot the earliest warning signs of autism. You know your child better than anyone and observe behaviors and quirks that a pediatrician, in a quick fifteen-minute visit, might not have the chance to see. Your childs pediatrician can be a valuable partner, but dont discount the importance of your own observations and experience. The key is to educate yourself so you know whats typical and whats not.
Monitor your childs development. Autism involves a variety of developmental delays, so keeping a close eye on whenor ifyour child is hitting the key social, emotional, and cognitive milestones is an effective way to spot the problem early on. While developmental delays dont automatically point to autism, they may indicate a heightened risk.
Take action if youre concerned. Every child develops at a different pace, so you dont need to panic if your child is a little late to talk or walk. When it comes to healthy development, theres a wide range of typical. But if your child is not meeting the milestones for his or her age, or you suspect a problem, share your concerns with your childs doctor immediately. Dont wait.
Regression of any kind is a serious autism warning sign
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How Is Autism Diagnosed
The specialist uses a set of standard tests to make a diagnosis. To be diagnosed with autism, someone must have lasting difficulties in social communication and social interaction in multiple situations, as well as restricted, repetitive patterns of behaviour, interests, or activities. These symptoms must have been evident from early life and significantly affect the persons life.
Autism is classified into different levels:
- Level 1: people requiring support
- Level 2: people requiring substantial support
- Level 3: people more severely affected and requiring very substantial support
Children can usually be diagnosed at around 2, but sometimes symptoms are subtle and children are not diagnosed until they start school or even until they become adults.
Diagnosis Of Schoolaged Children
A child may present after the preschool period for a number of reasons. It may be that the child did not come to the attention of child health professionals and/or the family has managed his or her difficulties. However, as the social world becomes more complex and academic demands increase, the child may experience more problems. Particular risk periods seem to be times of transition, such as nursery to primary, or primary to secondary school. Schoolaged children and their families will also require an MAA and coordinated care plans that encompass health, social and education services, and the voluntary sector. Close liaison with teachers and educational support staff will be of particular importance.
For children over 5years , a single referral point is more difficult to achieve as referral may be made to a number of different agencies such as the local child and adolescent mental health service or education psychology service, rather than directly to the child health team. In these cases, the paediatrician may well be asked to supplement the developmental history, carry out a physical examination, and advise about appropriate investigations, and use of particular interventions including biomedical treatments and medication.
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What Are The Signs And Symptoms Of Asd
Every person with ASD is unique, so the timing and severity of the first signs and symptoms can vary widely. Some children with ASD show signs within the first few months of life. In others, symptoms may not become obvious until 24 months or later. Some children with ASD appear to develop normally until around 18 to 24 months of age and then stop gaining new skills and/or start losing skills.
During infancy , a child may show symptoms that include:
- Limited or no eye contact
- No babbling
- Appearing not to hear
- Playing with toys in an unusual or limited manner
- Showing more interest in objects instead of people
- Starting language skills but then stopping or losing those skills
- Showing repetitive movements with their fingers, hands, arms or head
Up to 2 years of age, there may be continuing symptoms from infancy. A child may also:
- Focus only on certain interests
- Be unable to have reciprocal social interactions
- Move in unusual ways, such as tilting their head, flexing their fingers or hands, opening their mouth or sticking out their tongue
- Have no interest in playing with other children
- Repeat words or phrases without appearing to understand them
- Have behavioural issues, including self-injury;
- Have trouble controlling their emotions
- Like to have things a certain way, such as always eating the same food
Possible signs of ASD at any age:
How Is Asd Diagnosed
There is no simple medical test for diagnosing ASD.
To diagnose a child with ASD, a healthcare professional observes the childs levels of:
This could include the childs:
- verbal skills
- how they relate to others
- behaviours related to their interests and activities
- repeated actions related to how they speak, move or use objects
To determine the severity of ASD, the healthcare professional observes the amount of difficulty the child has with:
- social communication
Medical professionals use the Diagnostic and Statistical Manual for Mental Disorders to evaluate ASD.
If a health care provider thinks that your child may have ASD, get a referral for a diagnosis. A specialist will create a detailed description of your child’s strengths and challenges. A team of health professionals may work together for this assessment.
Testing for ASD will also make sure that this is not a different condition. For instance, sometimes hearing loss can explain your childs unresponsiveness in social situations or when their name is called.
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