The Australian Autism Handbook

1. Autism is a complex neurological condition affecting communication and behavior

Autism spectrum disorder (ASD) is a neurological (or brain-based) condition which affects child development in the first few years of life.

Core features of autism include difficulties in social communication and interaction, restricted interests, and repetitive behaviors. These characteristics exist on a spectrum, meaning they vary in severity and presentation from person to person. Autism affects approximately 1-2% of the population worldwide, with a higher prevalence in males.

Key aspects of autism:

• Challenges in social reciprocity and non-verbal communication
• Restricted, repetitive patterns of behavior or interests
• Sensory sensitivities (hyper- or hypo-responsiveness)
• Difficulties in developing and maintaining relationships
• Varying levels of intellectual and language abilities

2. Early signs of autism can be detected in infancy and toddlerhood

Studies of younger siblings of children with ASD – who have a higher likelihood of developing autism themselves – suggest that some children may display signs around, and even before, the age of 12 months.

Red flags for autism in young children include lack of babbling, pointing, or other gestures by 12 months, no single words by 16 months, and no two-word phrases by 24 months. Other early signs may include:

• Limited eye contact and social smiling
• Reduced response to name
• Lack of imitation or pretend play
• Unusual sensory interests or aversions
• Repetitive movements or use of objects

Early detection is crucial as it allows for timely intervention, which can significantly improve outcomes. Parents should trust their instincts and seek professional evaluation if they have concerns about their child's development.

3. Diagnosis involves comprehensive assessments by multidisciplinary teams

The diagnostic evaluation may be conducted by: one health professional alone (either a paediatrician or child and adolescent psychiatrist or psychologist) or a team of health professionals (called a multidisciplinary team) who will decide together.

Diagnostic process typically includes:

• Comprehensive developmental history
• Observation of the child's behavior
• Cognitive and language assessments
• Medical examinations to rule out other conditions

Standardized tools such as the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R) are often used. The diagnosis is based on criteria outlined in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which includes persistent deficits in social communication and interaction, and restricted, repetitive patterns of behavior, interests, or activities.

4. Girls with autism may present differently and are often underdiagnosed

It's increasingly believed that the way we diagnose autism is biased towards males. Present methods aren't capturing all girls with autism, making the difference in rates between the sexes look greater than it actually is.

Autism in girls often manifests differently from boys, leading to underdiagnosis or misdiagnosis. Girls may:

• Have better language and social imitation skills
• Show less obvious restricted interests
• Exhibit more subtle repetitive behaviors
• Be more adept at masking their difficulties (camouflaging)

This "female autism phenotype" can make it challenging for professionals to recognize autism in girls, especially those with average to above-average intelligence. Increased awareness and adjusted diagnostic criteria are needed to ensure girls with autism receive timely diagnosis and support.

5. Co-occurring conditions are common and require careful management

Many conditions co-occur with autism and can have a big effect on autism characteristics and a child's independence and sense of wellbeing.

Common co-occurring conditions include:

• Attention Deficit Hyperactivity Disorder (ADHD)
• Anxiety and depression
• Intellectual disability
• Epilepsy
• Gastrointestinal problems
• Sleep disorders

These conditions can significantly impact a person's functioning and quality of life. Proper identification and management of co-occurring conditions are essential for comprehensive care. Treatment may involve a combination of behavioral interventions, educational supports, and in some cases, medication under careful medical supervision.

6. Early intervention is crucial for improving outcomes in autism

International research shows that children who need supports and services do best when these services start while the child is still very young, and their brain's wiring is most receptive to change.

Effective early interventions focus on developing:

• Social communication skills
• Play and adaptive skills
• Cognitive abilities
• Language and speech
• Motor skills

Evidence-based interventions include Applied Behavior Analysis (ABA), developmental approaches like the Early Start Denver Model (ESDM), and naturalistic developmental behavioral interventions. The intensity and type of intervention should be tailored to the individual child's needs and family circumstances. Early intervention can lead to significant improvements in language, cognitive skills, and adaptive behavior.

7. Positive behavior support and individualized education plans are key for school success

The ultimate outcome of a school-wide positive behaviour support system is to create an environment where everyone has the best chance possible to thrive, learn and succeed.

Strategies for school success include:

• Individualized Education Plans (IEPs) tailored to the child's strengths and needs
• Positive Behavior Support (PBS) to address challenging behaviors
• Environmental modifications to reduce sensory overload
• Visual supports and schedules to aid comprehension and transitions
• Social skills training and peer support programs

Collaboration between parents, teachers, and specialists is crucial for creating a supportive learning environment. Regular assessment and adjustment of strategies ensure ongoing progress and address changing needs as the child develops.

8. Parents play a vital role in supporting their child's development and wellbeing

Your child with autism is a unique individual and with time you will discover the things they are good at and the areas where they need more help.

Parental involvement is critical for:

• Implementing and generalizing skills learned in therapy
• Advocating for appropriate services and supports
• Fostering independence and self-advocacy skills
• Promoting social inclusion and community participation

Parents should educate themselves about autism, trust their instincts, and work closely with professionals to support their child's development. It's important to celebrate the child's strengths and unique qualities while addressing areas of difficulty.

9. Autism affects the whole family, requiring support and self-care strategies

If you are the manager of a person who has a child with autism try to allow her some flexibility to manage appointments. I was lucky through Darcy's early intervention in that I had a little flexibility in my shifts and managers who were understanding.

Family impact and coping strategies:

• Seek support from extended family, friends, and support groups
• Prioritize self-care and maintain personal interests
• Consider respite care and professional counseling when needed
• Educate siblings and involve them in supporting their autistic brother or sister
• Advocate for workplace flexibility and understanding

Recognizing and addressing the needs of all family members is crucial for maintaining a healthy family dynamic. Building a strong support network can help families navigate the challenges and celebrate the joys of raising a child with autism.

10. Transition to adulthood requires planning and ongoing support

Even if it's within your financial means to do so, you may wish to look at getting a private assessment, as you're likely to be able to get a diagnosis faster this way.

Key considerations for adulthood transition:

• Vocational training and employment support
• Post-secondary education options
• Independent living skills development
• Ongoing social skills and relationship support
• Financial planning and guardianship considerations

Planning for adulthood should begin in early adolescence and involve the individual with autism in decision-making as much as possible. Continued support and accommodation in education, employment, and community living can help autistic adults lead fulfilling and independent lives.

Last updated: July 26, 2024