Understanding Autism

Discover how we can all effect change to empower
families and those living with autism.
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Browse this section for tips on important aspects for understanding and living with autism.

Discover how we can all effect change to empower families/whānau and those living with autism.

Understanding autism for
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01. Behaviours

The sensory differences associated with autism, as well as difficulties with executive function, adapting to change, social pressures, misunderstandings, etc., can contribute to high levels of anxiety, frustration, and confusion for the individual, eventually leading to challenging behaviour.

What we define as challenging behaviour is the result of a clash between the demands of a situation and the individual’s ability to cope. It can be an attempt to communicate needs and emotions. When communication attempts are unsuccessful, the result can be increasing feelings of failure and escalating tensions with caregivers.  

Individuals who may not be able to communicate their need for others to modify expectations maybe more prone to frustration. They may be unable to negotiate personal or emotional boundaries to express how they are feeling. 

By providing an alternative means to communicate (e.g. via visual cues), we provide the key to behaviour support for all autistic individuals. Establishing routines and encouraging regular calming activities can also support your child to maintain some autonomy, order, and predictability. 

“ … if your child is presenting challenging behaviour at the moment, this does not mean that it will feature throughout their life. Skills and coping strategies develop – both your child’s and your own.” (Whittaker, P. (2001). Challenging Behaviour and Autism: Making Sense, Making Progress. UK: National Autistic Society, p.5).

Encourage yourself, your family, school, and anyone involved with your child to become educated and knowledgeable about what autism really is. It is critical to understand autism and the causes of challenging behaviour before trying to implement strategies or a behavioural management plan. Once you have learnt how to ‘enter’ your child's way of thinking, you will be able to adjust the way you think and communicate with them.

Meltdowns

Meltdowns may occur when an autistic person’s cognitive ability to cope with a situation is exceeded, or they may be triggered by sensory overload. Although meltdowns may look similar to temper tantrums at first glance, there are some easy-to-spot differences: 

Sign 

Meltdown

Tantrum

Is the individual aware of surroundings/looking for a reaction?

No

Yes

Is there a “goal” they want to accomplish?

No

Yes

Can they communicate their needs/demands?

No

Yes

Are they in control of their behaviour/avoiding injury?

No

Yes

Once the problem is resolved, do they calm down quickly?

No

Yes

 

 

 

 

 

A tantrum is an angry or frustrated outburst, while autistic meltdowns are a reaction to being overwhelmed. A person with autism has no control over their meltdowns and will not benefit from measures to reduce tantrums (e.g. distraction, hugs, incentives to ‘behave’, or any form of discipline). The best strategy for caregivers may be to provide a calm, safe space for the child, eliminating any further cognitive or sensory input, and wait for the meltdown to pass.  

Meltdowns can sometimes be prevented by keeping a close eye on any warning signs that precede them. These may include:

  • the individual suddenly not meeting your eyes anymore (if they have been looking at you before),

  • increased fidgeting and stimming,

  • increased frowning, vocal or facial ticks,

  • raised voice, talking faster,

  • difficulty understanding questions/incoherent answers,

  • 'spacing out' or becoming unresponsive.

If you suspect that a meltdown may be approaching, don’t ask the person if they are ok, or if they need help. Even questions like these will place further strain on their cognitive resources and could be the final straw pushing them into overload. Instead, assist them to leave the challenging situation and move to a calm, safe space. In some cases, a brisk walk, bouncing on the trampoline, or other vigorous exercise may be helpful in reduce adrenaline and preventing a meltdown.

Further information

  • For very challenging behaviour, ask your NASC for a referral to Behavioural Support Services.

  • You may find local parent/caregiver support groups helpful sources of information. 

  • Autism New Zealand education programmes.

 

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02. School

The decision parents must make about the educational setting for their child is an important and sometimes difficult one, as there are currently no specialist autism schools in New Zealand. You may qualify for some extra assistance, which will be determined by assessment from the school.

The following list of questions to ask schools in your local area before enrolling your child may be helpful.

  • How does the school define 'inclusion'?

  • How does the special needs department operate?

  • When/how are students offered additional support?

  • How are support staff assigned to students?

  • Who is responsible for writing Individualised Education Plans (IEPs), how is progress monitored, and who is involved?

  • What systems are in place for transitioning in and out of the school?

  • What autism-specific training have staff received? (Keep in mind that a teacher who has no ASD training may also be very successful just because of who they are. Autism NZ may be able to provide professional development and be part of the team that looks at the appropriate support and how best to meet the needs of an individual child.)

  • Does the school have a social skills programme?

  • How is the child encouraged to participate in clubs/social situations?

  • Is there a buddy/peer support system in place for the child?

  • How will peer groups be supported to understand the child’s difficulties?

  • How would the school support the child’s organisational skills?

  • Is there additional support/alternative arrangements for lunch and break times?

  • How would the child’s sensory needs be addressed?

  • Can the student/staff liaison ensure all staff are aware of the child’s needs, difficulties, and related support strategies, eg. dealing with meltdowns?

  • Can the school provide a quiet area for calming down?

  • You may also ask for a copy of the school policy around special needs and challenging behaviour.

It is can be useful to provide the school and each new teacher with a profile of your child, including information about what your child is good at or enjoys, things that calm them down or hype them up, things that may trigger a bad reaction, and some tried and true communication ideas. If you are unsure what to include, here are some examples of student profiles.

 

Further information

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03. Community

Autism is considered an invisible disability. Therefore, it may be helpful to make people in your immediate community aware that your loved one is on the autism spectrum.

For example, parents have suggested asking neighbours to make contact if they see the child unaccompanied. If your child is prone to wandering or getting lost, you may also want to take a short profile with their name, photo, phone number, and guardian details to the local police station.

Get to know the staff at places you visit regularly, such as local cafés and libraries. Tell them a little about your child, and tell them about some of the difficulties they may experience. Most people are happy to try and work with you, and sometimes, they may even be able to provide a quiet area if things get overwhelming.

 

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04. Strategies

In terms of interventions or approaches, each child with autism is different. What works for one child may not work for another. Feedback from parents indicates that visual supports and Social Stories may be particularly helpful. Below is also information on strategies for communication and sensory difficulties.

Visual supports

Visual supports are a great way to provide information, as people with autism tend to be visual thinkers. Some may have difficulty in processing or retaining verbal information long enough to make sense of it. We all use visuals for information – take a visit to the airport, where we rely heavily on the cues around us to obtain information for flight arrival/departure info, bag drop offs, gate numbers, etc. An autistic person may need information imparted in a visual way for a wider range of things.

We can use visuals to explain time, space, or abstract concepts; to plan the day, to communicate with people, and much more. Used consistently, and individualised to the person’s level of understanding and age, visuals can help reduce anxiety and decrease difficult behaviours.

Social stories™

Social Stories were developed by Carol Gray and colleagues in 1993. This strategy uses stories told in the first person to increase awareness of situations, explaining how and why people behave and think in certain ways. 
Social Stories are created using positive, reassuring, and respectful language, photos, or any visual supports, explaining appropriate ways of interacting with others in a variety of situations.

Examples of further evidence-based approaches 

  • Parent-implemented interventions, such as Autism New Zealand’s programme “Way to Play

  • Cognitive behavioural therapy (CBT)

  • Relationship development intervention

  • Social skills training groups

  • Speech-language therapy

  • Physical exercise

  • Prompting

  • Scripting

  • Social narratives

A full report of 31 evidence-based practices (2012) is available here, and another of 27 evidence-based practices (2014) is available here.

Visit your local branch page for more information on services available near you.

Alternative therapies

Some alternative therapies have also been tried successfully. The approaches listed below have some anecdotal evidence to support their efficacy:

  • Counselling

  • Mindfulness

  • Nutritional therapy

  • Music therapy

  • Sensory diet

  • Art therapy

  • Animal/equine therapy

  • Dance therapy

  • Drama therapy

  • Osteopathy 

Communication 

Communication can be a significant area of difficulty for those on the autism spectrum. It is dynamic and complex, with a lot of meaning conveyed by body language, context, gestures, and facial expressions. Children with autism may find these unspoken aspects hard to understand, as well having having difficulty with the unpredictable, spontaneous, and multi-sensory nature of social communication. 

If you want to change the way your loved one communicates with you, you must first change the way you communicate with them:

  • Make your communication style literal, unambiguous, clear, detailed, direct, and concrete.

  • Avoid phrasing requests as questions or observations with implied meaning.
    Examples:
    Instead of “Do you want to come in for dinner?” - “Please come in for dinner now.”
    Instead of “I might need a hand with this.” - “Please stay here for a moment and help me with this.”  

  • Limit the amount of information presented in one go: address one thing at a time.

  • Adapt your pace to the person. Be patient, allow time to respond. Pause. Rephrase.

  • Use the person’s name first. 
    Example: Instead of “Let’s get in the car, John.” - “John, let’s get in the car."

  • Explain things in the order they will happen.

  • Explain why things need to happen in a certain way to counteract over-analysing.

Sensory 

Many people on the autism spectrum have difficulty processing sensory information, which can have a profound effect on their life. Some may be sensory-seeking, needing certain sensory stimuli in order to feel a sense of calm and balance; others may be sensory-defensive, experiencing certain stimuli as highly aversive or even painful and withdrawing as a result. Some are both sensory-seeking and sensory-defensive, depending on the stimulus. 

Strategies for sensory differences:

  • Modify the environment to eliminate the problematic stimulus.

  • Provide quiet areas.

  • Encourage sensory experiences every day. Offer squeeze toys, ‘goop’, fidget toys, climbing rough trees, crawling on different surfaces, trampoline, handstands, bubble wrap, etc.

  • Offer headphones (noise-cancelling or playing music).

  • Offer sunglasses.

  • Offer a baseball cap to shield from bright light.

  • Use seamless clothing made from natural fibres.

  • Use weighted vests/blankets/toys.

If your child is particularly sensory defensive, you may consider seeking the advice of an occupational therapist who specialises in ASD and Sensory Processing Disorders.

Further information

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05. Taking care of yourself

Challenging behaviours in your child can often make you feel stressed, angry, and tired, indirectly affecting your relationships with partners, family/whānau, and friends.

It can be common for caregivers to forget about the importance of or feel guilty for taking care of themselves. It may be difficult to switch off, carergivers can at times become very isolated. It is vital that you continue to look after yourself and other relationships in order to be able to give the best support to your loved one. 

Although a lot of the below suggestions are easier said than done, some common strategies to look after yourself are:

  • Schedule regular 'me' time.

  • Have regular catch-ups with friends.

  • Spend time with your partner or other children.

  • Attend support groups.

  • Keep physically active.

  • Attend counselling if you need. It can be very helpful to have a place where you can openly talk without feeling judged.

  • Make sure you get enough sleep. If sleep is an issue for you, talk to your GP.

  • Eat healthy food and keep hydrated. There is a direct link between your physical well-being and mental well-being.

  • Continue to do things that you love.

Further information

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01. Relationships

No matter where a person sits on the vast spectrum of neurodiversity, it is part of human nature to need friends, someone who knows and understands us, who can share in highs and lows. The feeling of social connectedness and support has been shown to improve health on all levels, protecting against depression, counteracting cognitive decline, and improving physical health. However, dating, friendships, and relationships can be a tricky subject to navigate at the best of times. For autistic adults, these things can be even more challenging. 

While some happily make use of internet forums and online dating or friendship sites, others may feel uncomfortable with this type of interaction due to the possibility of misunderstandings and the lack of real, authentic conversation.

A shared interest may provide an alternative opportunity to find like-minded people. Make a list of things you like to do, and then decide if you would like to do any of them with a companion. Once you have identified possible activities, search online for groups who share your interest. The website meetup.com is a good place to start, offering a wide variety of groups, including book and film clubs, Sci-Fi, spy games, hiking, philosophy, cooking, writing, music, and much more. You can also easily set up your own special interest group if it doesn’t already exist in your area. Another safe way to meet people can be attending evening classes at your local Community College, where you will have the benefit of an experienced tutor who can provide structure to the activity and make sure everyone gets to be involved. 

In some areas, Autism New Zealand holds adult social groups, which are casual get-togethers providing an opportunity to share stories and meet others. We have had several people make new friends in these get-togethers and form their own private groups as a result. We can also refer to existing social networks within regions.

 

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02. Employment

Autistic adults have much to offer a workplace; yet, only 32% are in paid work compared to 80% non-disabled people. This is due to a wide variety of complex issues, including disadvantages in the application process due to communication differences, employer bias, and lack of confidence or anxiety after a previous negative experience. 

If you are from Auckland, see below details for the Autism New Zealand Employment Support Programme, however if you are outside of Auckland, other Supported Employment Organisations may be able to assist (Google *your city* + Supported Employment) like Workbridge, Emerge or contact your Autism New Zealand branch for local knowledge. 

Some other ideas to get you started:

Volunteering

In order to increase your chances of finding paid employment, it is always a good idea to get some experience through volunteering. 

Volunteering is a great way for you to ease into an employment routine gently, obtain professional references or a proven track record of reliability and skill. It can also boost your confidence and help you feel better about yourself, just by getting out of the house and doing something to make a difference. 

Being seen in the community as doing something worthwhile or altruistic can also open doors to networking opportunities. It can be a perfect conversation starter, which you could use to explain that you are currently unemployed, but wanting to do something useful while you are looking for work. 

Google volunteering + *your city* to find organisations who coordinate volunteer placements, or contact a company you like to offer your time. 

Learn more skills for free

Many tertiary education and vocational training providers offer free courses for youth up to 19 years via the Youth Guarantee programme. Other training programmes for sought-after professions are offered at Zero Fees regardless of the age of the learner, such as the National Certificate in Health, Disability and Aged Care (Foundation Skills) at FutureskillsFor those who don't do well in a classroom setting and prefer to learn on their own, Open Polytech and the Southern Institute of Technology offer a wide range of distance learning courses up to postgraduate level at Zero Fees.

If formal tertiary education sounds like too much of a commitment, even taking an inexpensive night class at your local Community College can be a way of getting an edge over other applicants. 

Keeping your options open

There is a fair amount of literature on employment support for autistic people, and most authors include a list of professions they deem suitable or unsuitable. By their very nature these lists tend to be simplistic, often focusing on stereotypical proficiencies: jobs that require accuracy and focus, are repetitive, technical, or deal with animals and nature. Other authors build their recommendations on presumed special skills or talents.

 Ask a trusted friend or parent for input, but don’t let a list tell you what you can and cannot do. Find out what you like and what you are good at — then go for that. 

Auckland Employment Support Programme

Ministry of Social Development funding now allows Autism New Zealand to offer an employment support service in its Auckland branch. Managed by an experienced staff member who understands the challenges and opportunities autism can present, the service focuses on pre-employment coaching and in-work support for the employee and the employer. It is specifically designed to provide the time and support needed to find employment that is suitable, meaningful and long-term allowing opportunities for further development.

The employment service includes: 

  • identification of realistic career options

  • creation of a step-by-step plan to gain employment

  • creation of a targeted CV and cover letters

  • practical job search skills

  • assistance in making the first approach to employers

  • interview practice and interview support

  • job-coaching

  • autism awareness training for employers of participants in the service

Jonathan Ball, who used Autism New Zealand’s employment support service to find work, speaks passionately about how his job has changed his outlook on life. You can watch the video here.

In order to be eligible for this service, job seekers should:

  • Have a formal (written) ASD diagnosis, and

  • Be on a main benefit from WINZ, and

  • Be willing to work a minimum of 15 hours per week in a mainstream workplace.

Further information
Autism New Zealand's Employment Support Facilitator employment@autismnz.org.nz.

For those wanting some inspiration to strike out on their own, the following book is highly recommended:
Simone, R. (2010). Asperger’s on the Job. Arlington, TX: Future Horizons

You may also find these books helpful:
Carley, M. J. (2016). Unemployed on the Autism Spectrum. How to Cope Productively with the Effects of Unemployment and Jobhunt with Confidence. London, UK: Jessica Kingsley Publishers.
Saperstein, J. A. (2014). Getting a Life with Asperger’s. Lessons Learned on the Bumpy Road to Adulthood. New York, NY: Perigree (Penguin Group)

  

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03. Supports

Support with living costs - Work and Income (WINZ)

Your local WINZ office is the first point of contact for financial support. You may be eligible for a range of payments and allowances, including:   

  • Disability Allowance (which can include financial support to access counselling and cover other medical expenses)

  • Supported Living Payment (which is meant to cover your living expenses, but does not oblige you to look for work or have frequent meetings with your case worker)

  • Accommodation Supplement (which helps with paying for rent or board) 

Extra supports - Needs Assessment and Service Coordination (NASC)

As of April 2014, people diagnosed with ASD are eligible to access the full range of disability support services. One of the most useful of these for autistic adults may be Individualised Funding (IF), which is intended to give eligible people more choice in how they are supported, allowing you to employ your own support workers and giving you a say in how your supports should be used. IF and most other disability support services are accessed through a Needs Assessment and Service Coordination (NASC) agency.

They will conduct a needs assessment to determine what kind of services you can receive, and they also refer people to appropriate service providers and manage payments.

For a more detailed description of NASC Needs Assessments and Services, please refer to the Ministry of Health website

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04. Taking care of yourself

Mental health

Good mental health and well-being are key aspects of the way that we live, work and play. Autistic people may experience higher mental health issues and can have lower resilience to stress.

According to the DSM-5, “about 70% of individuals with autism spectrum disorder may have one comorbid mental disorder, and 40% may have two or more comorbid mental disorders.” (American Psychiatric Association, 2013, p.58). Depression and anxiety disorders are the most common given the painful environmental experiences autistic people may experience. Heightened sensitivity, bullying, loneliness, and different neurological structures can all contribute to being more vulnerable to mental illness.  

Only a qualified medical professional can make a diagnosis and initiate treatment, but online self-tests for depression and anxiety can help you decide whether or not you should raise the question with your GP.

Once you have a diagnosis, Work and Income (WINZ) may be able to help pay for counselling or medication if necessary.  

If you already have a diagnosis or are on medication but feel no improvement, bring this up with your psychologist, psychiatrist or doctor as they might want to revise your treatment strategy. 

Physical health

Physical self-care can be challenging for autistic adults because of motor or sensory difficulties.

Physical activity

Sensory difficulties, social anxiety, or fine motor difficulties can make it daunting for us to exercise in common settings such as the gym, group fitness or yoga classes. These options often present other obstacles making them inaccessible.

Physical activity is important for good health, the most important thing is to find something that you enjoy, provides routine and can easily be incorporated in to your lifestyle.

Other options you could try following online workouts, walking instead of driving or using public transport, or movement based video games.

Sleep

Sleep disorders are common in those on the autism spectrum. A good quality sleep is essential for everyone's health and well-being.

Ways to improve your sleep might include establishing a routine such as having a bath and going to bed at the same time each night. Other tips include using a weighted blanket, staying away from screens, and avoiding caffeine and alcohol.

Healthy eating

Sensory issues may limit the range of food options therefore it is important to find alternative ways to have a varied and balanced diet. You could try experimenting with changing the texture of food or disguising flavours with something you like.

If you are trying to avoid a particular food or need to reduce your intake, it’s a good idea to replace it with a healthy alternative, as the food item may be part of a routine and often can’t just be dropped without a replacement.

It's important to always consult with a qualified nutritionist before making any drastic changes to your diet.

 

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