Autism spectrum disorder (support services)

The word “autism” refers to autism spectrum disorder (ASD), which now also includes what used to be called Asperger syndrome. ASD is a brain-based condition, in which the brain has not developed in the usual way. It can affect a person’s ability to interact with the world around them and may lead to repetitive behaviors or a narrow range of interests and activities.

Many people on the autism spectrum have sensory sensitivities, and may be under- or over-sensitive to any of the five senses. Everyone on the spectrum is different, with a unique set of strengths, interests and abilities, so understanding each person’s strengths and needs can take time.

Sometimes it can be hard to understand why a person on the autism spectrum behaves the way they do, and in social situations they may do or say things that others find unexpected. It helps to remember that the world can be a very confusing place for them, and the best response is to be supportive and caring.

There is no single cause of ASD. Genetic factors and some medical conditions have been identified as possible contributors. A person’s family or social background is never a reason for developing ASD.

Behaviors and symptoms#

A range of behaviors and symptoms is commonly linked with ASD. These may include:

• Difficulties communicating and interacting with other people
• Speech and language difficulties
• Repetitive behaviors, or behaviors of concern
• A strong interest in one topic or subject
• A preference for routines and a dislike of change
• Unusual reactions to what they see, hear, smell, touch or taste
• Sleep problems
• Attention problems
• Anxiety

Around half of people on the autism spectrum also have an intellectual disability.

Asperger syndrome was previously diagnosed as a separate developmental disorder affecting how the brain processes information. It is now grouped under the single umbrella term ASD and is no longer given as a separate diagnosis. However, people previously diagnosed with Asperger syndrome who identify with that label can still refer to their condition that way. “Pervasive developmental disorder not otherwise specified” (PDD-NOS) is an older general term for children who show some characteristics of ASD, and prompt concern about their development, but do not meet the full diagnostic criteria.

Assessment and diagnosis#

Most people on the autism spectrum are diagnosed in early childhood, but ASD can be diagnosed at any age. Diagnosis is made by professionals experienced with ASD, such as a psychiatrist, developmental pediatrician or psychologist.

A detailed assessment is essential for an accurate diagnosis. It is usually carried out by a multidisciplinary team that may include a pediatrician, a psychologist or psychiatrist, and a speech pathologist. Some children show signs of ASD by around the age of two, but a confident diagnosis is sometimes not possible until three or older.

There is strong evidence that early intervention improves outcomes and gives children the best chance of reaching their potential. Both publicly funded assessment teams and private practitioners offer assessments. You may be able to contact assessment teams directly, though a referral from your doctor or pediatrician is sometimes needed; private assessments are generally done on a fee-paying basis.

Coming to terms with a diagnosis#

A diagnosis of ASD can bring up many different feelings. You may go through an initial period of distress and grief, which is completely normal. You may also feel relief at finally having an answer and being able to plan ahead.

A wide range of services and therapeutic supports is available for children and adults with autism. These can include information and advocacy, assessment, early intervention therapies, support at school, behavior support, individual support packages, supported accommodation and respite care. Families can also get help to learn about autism, to manage behaviors of concern, and to access respite.

Research and experience show that the most effective approach combines educational and behavioral strategies that are highly structured and tailored to the individual. It is important to begin structured intervention as early as possible. Discuss the different treatment options with your healthcare team.

Researching therapies safely#

It is worth doing your own research, but be aware that not all information online is reliable. Check with your doctor or with ASD professionals, and be wary of any website that claims a “cure” for ASD. ASD is a lifelong condition; while many therapies and strategies can support a person on the autism spectrum, there is no cure.

Good resources explain what the research says about each therapy, along with the approximate time and costs involved. Other parents of children on the autism spectrum can also be excellent sources of information and support, and many areas have ASD-specific support groups, playgroups and parent groups.

Behavior support#

Behaviors of concern are behaviors that create a barrier to a person taking part in and contributing to their community, and that may pose a risk to the health and safety of the person or others. A person on the autism spectrum may develop behaviors of concern such as self-injury, anti-social behavior, or dangerous behaviors such as wandering off.

A range of services exists to help people on the autism spectrum, their families, teachers and support staff find the information and strategies they need to reduce behaviors of concern and build more positive alternatives. Some programs teach parents about positive behavior support through workshops and follow-up consultations.

It is important to work out the function of a behavior — the reason it happens — so you can get help from the right professional. For example:

• If the behavior stems from a breakdown in communication, a speech pathologist may help.
• If it relates to sensory processing, an occupational therapist may be the right person.
• Often several therapists work together on different areas.

Many areas have disability intake or referral services that can explain eligibility and referral pathways for behavior support, and private practitioners and organizations also offer behavior intervention on a fee-for-service basis.

Early years#

You can support your child during the early years by accessing early intervention services, which provide therapies and supports to help young children with autism reach their potential. Many regions run early childhood intervention services for children with a disability or developmental delay from birth to school entry, often coordinated through a central intake point. These services are built on a partnership between parents and professionals, with the child and family at the center. Parents and carers may also benefit from local respite options, including in-home respite offered by some local services.

Starting school#

Preparing a child on the autism spectrum for school can be a complex process. Each child has unique strengths and skills and may need a personalized learning and support plan, so the earlier you begin planning, the better.

• Think about which school might suit your child best, and talk to teachers and staff about their needs.
• If the staff are receptive, welcoming and willing to be flexible, arrange a visit.
• Consider going alone on your first visit so you can talk openly about your child’s strengths and needs.

Choosing a school is only the first step. Staying engaged and providing ongoing support helps your child adjust well to their new environment.

The teenage years#

The teenage years can be challenging for young people on the autism spectrum and their families. Like any teenager, they may face issues such as sexuality, bullying, anxiety, depression and other emotional difficulties. It can be hard to know when to start talking about puberty and how to explain the changes they are going through.

Be as open and honest as you can, and let them know you are there for them, even when they do not want to talk. Some teenagers on the autism spectrum are teased or bullied, so watch for signs and offer support. As school nears its end, planning the next steps can raise anxiety; career education and transition planning resources can help families think through study, work and other options for young people with a disability.

Adults with autism#

Many adults live with ASD. Some can live independently with minimal help, while others need more support to manage day-to-day life. A range of services helps adults on the autism spectrum live as independently as possible and take part in their community, including respite, individual support packages, case management, advocacy, employment services and shared accommodation.

Case management — sometimes called service coordination — can help a person with ASD and their family understand and navigate the services available to them.

Key points#

• There is a range of behaviors and symptoms commonly linked with ASD.
• There is a range of services and therapeutic treatments available for children and adults who have autism.
• It is important to begin structured intervention as early as possible in the child’s development.
• There are a range of different treatment options which you should discuss with your healthcare team.
• Staying engaged and providing ongoing support helps your child adjust well to their new environment.

Where to get help#