What we define as behaviours that challenge 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.

Online tests leave out many things, including things that only a skilled diagnostician will be able to assess. All online tests can do is ask for your opinions about your child’s behaviour.

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 people. 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.”*

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 behaviours that challenge before trying to implement strategies or a behaviour support 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:

A tantrum is an angry or frustrated outburst, while autistic meltdowns are a reaction to being overwhelmed. An autistic person 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 reducing adrenaline and preventing a meltdown.

Further information

• In some very challenging situations, ask your Needs Assessment and Service Coordination (NASC) for a referral to Behaviour Support Services.
• You may find local parent/caregiver support groups helpful sources of information.
• Autism New Zealand education programmes.

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 autism training may also be very successful just because of who they are. Autism New Zealand 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 autism?

• 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, e.g., 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 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

• Ministry of Education Learning Support
  
• Help with legal issues with school stand downs and exclusions
• Autism NZ education programmes for parents, teachers, teacher aides and other professionals

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 strengths and 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.

There are many ways that family/whanau, professionals and other involved people can offer support to the autistic person in their lives. In terms of strategies or approaches, each autistic child is different. What works for one child may not work for another.

Some strategies include:

• Taking a small steps approach, celebrating success
• Communication Supports and Strategies, including:
  • adapting your communication style
  • alternative communication for those without or with limited verbal language
• Visual supports, including
  • objects
  • remnants
  • photographs
  • symbols
  • drawings
  • written word
  • technology
  • routine charts
• Stories for understanding, including
  • Social Stories ™
  • Stories for self-esteem
  • Stories that give information
• Supporting behaviour, including
  • understanding that behaviour is communication
  • adapting environments
  • analysing the circumstances around and before the behaviour to eliminate/reduce triggers
• Preventing sensory overload
• Planning for success, including:
  • taking small steps
  • giving advance notice
  • preparing through rehearsal, role play, videos, practise etc.
  • planning an exit strategy/if changes occur
  • communicating success

These are just a few of the supports you may consider putting in place, and how well they work for one individual will vary based on many factors, including the autistic person’s age, involvement in the process, learning or communication style, how well the strategy is adapted to that individual, how it is introduced and if that is done positively, etc.

The best way to learn more about all of the above is to attend one of the Autism New Zealand education programmes.

The New Zealand Autism Guideline also provides summaries and recommendations for best practice in various strategies and approaches.

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

• Your local Autism New Zealand branch
• Parent 2 Parent
• Carers NZ
• Counsellors 
• Disability support NASC

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.

This is due to a range of issues. The recruitment process often does not play to autistic strengths due to communication differences, pre-conceptions that employers may have about autism, and the lack of confidence or the anxiety that an autistic person may have after previous knockbacks.

Autism New Zealand offers a range of Employment Support and Transition programmes in the Auckland and Wellington regions. For more information click here.

If you are outside of Auckland or Wellington, other supported employment organisations may be able to assist. You can find these online by doing a search for supported employment agencies and the name of the area that you live. You can also contact your Autism New Zealand branch for knowledge about what’s available in your community.

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 with a formal autism diagnosis 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. Individualised Funding 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 the Needs Assessment and Services Coordination (NASC) and other supports, please refer to the Ministry of Health website.

According to the 5th edition of the diagnostic and statistical manual (DSM-5)*, about 70% of autistic people have one co-occurring mental health condition, and 40% may have two or more co-occurring mental health conditions. Depression and anxiety 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 health conditions.

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 support 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 autistic people 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 include following online workouts, walking instead of driving, or using public transport, or movement based video games.

Sleep:

Sleep difficulties are common for autistic people. 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.

*American Psychiatrist Association. (2013). Diagnostic and statistical manual of mental disorders. (5th ed.). Arlington VA: Author.