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.
Waiting For An Autism Diagnosis
You might be put on a waiting list for assessment. Try not to see this as a period when nothing happens. If you can, look for other options you might be able to get an assessment sooner.
Occasionally, the outcome of your assessment might be a recommended period of watchful waiting, especially if your child is younger than 1-2 years. This means your health professional wants to see whether your childs symptoms change with a few more months of development. Its possible the symptoms might reduce over time or become more pronounced.
If youre told to wait and watch, again the key is to be proactive:
- Contact the NDIS. The NDIS can support children with developmental difficulties, even before an official diagnosis of autism.
- Get your child checked every three months by your child health nurse, GP or paediatrician.
- Seek a second or even third opinion if you feel you want one.
Diagnosis In Older Children And Adolescents
ASD symptoms in older children and adolescents who attend school are often first recognized by parents and teachers and then evaluated by the schools special education team. The schools team may perform an initial evaluation and then recommend these children visit their primary health care doctor or doctors who specialize in ASD for additional testing.
Parents may talk with these specialists about their childs social difficulties including problems with subtle communication. These subtle communication issues may include problems understanding tone of voice, facial expressions, or body language. Older children and adolescents may have trouble understanding figures of speech, humor, or sarcasm. Parents may also find that their child has trouble forming friendships with peers.
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What Causes Autism Spectrum Disorder
There is no clear-cut cause of ASD. Some causes that are supported by research include genetic and some environmental factors. Specific genetic causes can only be identified in 10% to 20% of cases. These cases include specific genetic syndromes associated with ASD and rare changes in the genetic code.
Risk factors include older parental age, low birth weight, prematurity and maternal use of valproic acid or thalidomide during pregnancy, among others. This field of study is an active one for reasearch.
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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Prepare For Early Intervention
While there is a critical period in child development from ages 0 to 3 years, you should look into different therapies for your child at diagnosis. There is no cure for autism, but there are therapies that can help create foundational skills for your child to build on as they grow and develop.
While early intervention is recommended, its never too late to determine if your child is eligible for certain therapies, including:
- speech therapy
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Getting An Autism Diagnosis For Children
If you think your child may be showing signs of autism, it is recommended that you make an appointment with your childs General Practitioner , or child and family health nurse.
Your GP or child and family health nurse will ask you questions about your childs development. They may also examine and observe your child. This will help them rule out other possible health or developmental issues.
If they think your child has some of the characteristics of autism, they may refer your child for further assessment.
Fast fact: Autism can be diagnosed in children aged from 18 – 24 months, but can sometimes be diagnosed even younger.
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Signs And Symptoms Of Autism In Babies And Toddlers
If autism is caught in infancy, treatment can take full advantage of the young brains remarkable plasticity. Although autism is hard to diagnose before 24 months, symptoms often surface between 12 and 18 months. If signs are detected by 18 months of age, intensive treatment may help to rewire the brain and reverse the symptoms.
The earliest signs of autism involve the absence of typical behaviorsnot the presence of atypical onesso they can be tough to spot. In some cases, the earliest symptoms of autism are even misinterpreted as signs of a good baby, since the infant may seem quiet, independent, and undemanding. However, you can catch warning signs early if you know what to look for.
Some autistic infants dont respond to cuddling, reach out to be picked up, or look at their mothers when being fed.
When Should I See My Doctor
It’s important to seek help if you are concerned you or your child has autism. Early intervention offers the best outcomes, no matter what type of autism a child has.
There may be different signs of autism in different ages.
In the first year, a baby with autism might not be interested in other people and may not make eye contact with their parents. They may not smile or gesture like other babies.
As toddlers, children with autism might not respond to their name, or might focus on activities like lining up toys. They may not be interested in playing with other children or might speak in a monotone way.
Older children with autism might have difficulties in social situations, following instructions or making friends.
Sometimes people are not diagnosed with autism until they are adults. They may spend their lives feeling like they dont quite fit in. They may have difficulties with relationships, work and social situations. They may also have mental health conditions like anxiety or depression.
Autism Awareness Australia provides information about signs of autism in people at different ages.
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How Common Is Autism
Overseas figures vary from about 1 in 59 to 1 in 100. There is not much information about how common autism – takiwtanga is in Aotearoa New Zealand.
Autism – takiwtanga is more common in boys than girls. But this may be partly because not all girls with autism – takiwtanga have been diagnosed.
It might seem like there are more children with autism – takiwtanga now than in the past. This is probably because of better recognition than in the past. It could also be because of changes in autism – takiwtanga diagnosis.
Autism – takiwtanga occurs in children and adults – it is usually diagnosed in childhood. Sometimes a diagnosis is not made until the teenage years or adulthood when social demands exceed a person’s abilities.
When Is A Child Diagnosed With Autism
Most children start to show signs of Autism Spectrum Disorder between the ages of 12 to 18 months old, however, most experts will not evaluate children for autism until they are at least 24 months old .
And most pediatricians are very observant and know the signs and symptoms to look for in children with Autism Spectrum Disorder. However, getting a diagnosis can vary from child to child. It really all depends on if your child is showing specific signs.
For example, we started seeing signs of Autism Spectrum Disorder in our daughter from the time she was 3 years old but were not able to get a diagnosis until she was 7 years old. The biggest reason for this is that girls are harder to diagnose with high functioning autism than boys.
And like my daughter, I went over 26 years without knowing that I too have Autism and have just recently been diagnosed.
On the other hand, my son who started showing signs of Autism between ages 1-2 years old was diagnosed at 3 years old.
You see getting a diagnosis can be different for everyone, but the sooner you get a proper diagnosis the sooner you can help your child.
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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.
How Long Will The Assessment Process Take
Make sure you ask your referring health practitioner or family nurse this question first, as assessment times vary greatly between practitioners.
Sometimes your child will be seen by a range of professionals on the same day, in the same place. This generally occurs when an assessment is conducted in a government service such as a Child Development Unit, or when conducted in an organisation.
Sometimes you will see only one health professional. This generally occurs when an assessment is completed in a private practice by a qualified professional. Sometimes you may only need one positive assessment to receive an autism diagnosis, at other times you may need to complete two autism assessments by two different types of professionals to receive an autism diagnosis.
It is important to note that in some instances the requirements to access funding and supports will be different from the requirements to receive a formal diagnosis of Autism Spectrum Disorder .
Once your childs assessment process has been completed, you will generally receive a written report within a few weeks.
Quick tip:If you are put on a waiting list for assessment, use that time to read more about next steps following a diagnosis, or what to do when your child does not receive a diagnosis.
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Testing For Other Medical Difficulties And Delays
Because other medical conditions sometimes occur with autism, your paediatrician might also do other tests, like a physical examination and history, and a hearing test. These tests:
- check for signs of other conditions that might explain your childs symptoms
- help to identify any other medical conditions that might need treatment.
Its also good for you and the professionals youre working with to know more about your childs strengths and difficulties in thinking and learning. Professionals assess these strengths and difficulties differently depending on your childs age:
- Developmental assessment this is for children under four years old.
- Cognitive assessment this is for children over four years old.
These assessments can help professionals understand whether your childs difficulties are caused by development delays or intellectual disability rather than autism.
Most children will also have a communication andlanguage assessment by a speech pathologist.
Some children might also have their daily living skills, like feeding themselves and dressing, assessed by an occupational therapist.
Create A Structured Environment
Autistic children often seek structured environments, routines, and work well when they have an established routine. They may have an emotional attachment to one specific toy, want to eat the same food, or wear the same clothes. However, there is a fine line between routine and obsessions or rituals.
It is important to differentiate between rituals and routines after learning about your childs autism diagnosis because enabling rituals may cause them to have a meltdown if something unpredicted happens.
Having a schedule can help your child throughout their day but you should leave room for new activities and make small changes as you go. Add extra time to help in the schedule for unforeseen circumstances and to help your child adjust.
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Other Supports And Therapies
Support for autistic individuals often means therapies that target their specific needs. In addition to ABA, which is considered the gold standard for autism support before age four, support may include:
- Speech and language therapy offers support for anyone with difficulties that relate to talking, feeding, processing language, and understanding body language and social cues. The communication challenges that make up major features of autism mean that many autistic children receive speech therapy.
- Occupational therapy helps people master fine motor tasks like handwriting, dressing, or feeding themselves, and challenges related to sensory processing challenges, which affect how intensely sensory input affects a persons nervous system.
Diagnostic Assessment Criteria For Children With Autism
There are two sets of autism spectrum diagnostic criteria commonly used throughout Australia:
The main criteria used is the American Psychiatric Associations Diagnostic and Statistical Manual of Mental Disorders . The DSM-5 requires professionals to assess for the symptoms of autism and the impact these have on your childs life. Symptoms are identified in two domains social communication and social interaction, and restricted and repetitive behaviours. It requires consideration to co-occurring diagnosis. This information can help clinicians in their diagnostic decision-making and identification of support needs.
The World Health Organisations International Classification of Diseases . The ICD-11 requires clinicians to specify the presence and extent of intellectual and language impairment, along with the impact on numerous areas of functioning.
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First Off Take A Deep Breath
A diagnosis of autism doesnt change who your child is or what they can accomplish. Research has grown exponentially over the past few decades, and there are always new treatment ideas and strategies being studied at colleges and research institutes across the country. Researchers have developed effective programs to help children with autism develop their communication, social skills, academics, motor skills, and vocational training so they can live long, healthy, productive lives. All of this starts with you, and the sooner it starts, the better.
My Child Has Not Been Diagnosed With Autism What Next
If you have gone through the assessment process and not received a diagnosis for your child, you may feel relieved by the results, but also a little frustrated or confused, and not know where to go to next.
The health professional conducting the autism assessment will be able to provide information about why your child did not meet the criteria to be diagnosed with an Autism Spectrum Disorder , and will provide you with a written report.
The assessing professional may be able to provide further information, and any other assessments that might be beneficial, or refer you to other supports and services.
Professionals conducting autism assessments are guided by a very specific criteria, and professional standards of practice, and need to ensure these are upheld when conducting an autism assessment. They generally take considerable time reviewing all the information before making a decision.
If you disagree with the outcome, it is best to discuss this with the health professional who made the assessment, and listen to the reasons why this was the case.
If you still disagree, you have the right to get another autism assessment completed for your child with a different professional or service provider.
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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.