Autism Ethics: Mandatory Reading for Parents

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Autism can be a controversial area for many reasons.

Societal attitudes and beliefs around Autism are still extremely fractured. All in one day, we can encounter people who believe that Autism is a pathology, a scary and/or negative diagnosis, a behavioural problem, and a serious developmental problem to be fixed or that cannot be fixed.

We still see medical doctors prescribing medication for Autism, when in fact Autism is not a condition that can be changed with medication. A person with Autism may have anxiety disorder or other issues that may benefit from medication. But these are not part of Autism per se, and it is actually often questionable whether these issues arise from a direct relationship to Autism. Likewise, and in part due to related assumptions and bias, there is a great deal of documented evidence that people with disabilities are more highly medicated than other populations in Australia.

And truth be told, people deserve and have the human right to have non-medication and least restrictive social and behavioural support options trialled first or in tandem with allopathic interventions. Likewise, we so often see psychologists taking a negative diagnostic and labelling approach to Autism and disability, and quite frankly we see this as unethical and unprofessional.

In the very same day we meet people who believe that Autism is a positive identity, a part of a person’s make up. We talk with people who see Autism as a differently wired brain and body that deserves respect. We work with parents who see Autism and their child as a person with gifts and abilities who is eccentric and different and needs to be supported. We know a lot of people who battle the system for the rights and access of their child to society, and these people tend to see Autism as a gift that society completely misunderstands.

This reflection comes from many years of practice and with experience of hundreds of cases. These are some of the insights that come forward as we reflect on Autism support.

In our work as Counselling Psychotherapists and Behaviour Specialists, we have to say that Autism and behaviour are not things that we seek to change. We do not ascribe to behaviour modification. All behaviour has a functional and a positive intention or purpose. Even quite socially negative and harmful behaviours have a basis in positive underlying functions – coming to understand these is key to providing positive person centred support.

This does not mean that we do not provide safety, boundaries, and a sense of right and wrong. What it means is that our basic underlying attitudes and beliefs are functional and positive.

Seeking to modify and manipulate behaviour is not ethical. It is a very negative way of doing things that wants to control people’s behaviour. Actually, people’s human rights prevent this kind of treatment. This is why we have laws around restrictive practices in Australia.

Helping a person or child or young adult toward positive behaviours is a very solid practice when we approach this with positive person centred methods. Below are a list of positive attitudes and beliefs we need our collaborators, clients, and parents to have in order to work with our service.

We work from a family therapy model. Parents must be willing to be clients of therapy themselves. The focus is not just on the child, but on all of us as people learning and growing and coming to terms with new ways of behaviour and being.

A parent in therapy learns to understand Autism in new ways. This changes the parent. We have so many parents that awaken to new ways of understanding, they get very excited and overjoyed to have someone listen to their concerns and to help with their day to day issues.

We believe that when we invest in mothers and fathers, we are investing in the best future for a child because the parent’s support and input will be the greatest chance that their child ever has to function in society and to become the best that they can be.

1. Autism forms a central part of how the brain and body functions.
2. Autism can form a core sense of identity that must be respected.
3. Autism is not something to fix or change.
4. Children with autism can be encouraged to grow in capacities and skills.
5. We do not change the behaviour of any person or child.
6. We do not ascribe diagnostic labels and blame children for their behaviour as if something is wrong with them.
7. We do not use NDIS funding reviews as an excuse to write horrible sounding negative reports that only cite diagnostic labels and that overlook a person’s strengths and abilities. It is quite possible to write a very strong funding review while using positive person centred and professional ethics.
8. We do not support negative or punitive attitudes that seek to change a child’s behaviour and to label the child as the person in the family with the problem.
9. We work best with parents who share their reality with us. Parents who share the good, bad, and the ugly, and are open to growing and change. Parents who are humble enough to know they do not know it all, and they are wanting to genuinely adjust what they are doing to help their child.
10. All Behaviour is relational and happens in relationship. Parents and support staff are part of the behavioural cycle. The sooner we wake up to our part that we play in behaviours of concern, the more quickly we will discover solutions.
11. Parents and support staff are usually a great percentage of the behaviour that needs to be addressed and moved forward in positive ways.
12. If a parent or support person is not willing to look at their own behaviour and role and to take a humble perspective and learn new attitudes beliefs and skills, they will not want to work with our service as we rely on parents and carers and staff to have these abilities.
13. Yes Autism presents challenges but most of these tend to come from society. In our view what really needs to change is that society needs to understand the positive reality of Autism.
14. At the most basic level children need unconditional love and acceptance.
15. Children with Autism need to be accepted and embraced for who they are, and in all that they are.
16. Children with Autism need to be treated with unconditional positive regard.
17. Yes, Autism can present issues that prevent a person from full participation in society. But there are hundreds of reasons why people cannot participate in society. Is this really the key point in life?
18. So a child or young adult with Autism will participate differently in society and you know what? Society and families should grow and change to see life from a place of diversity and different abilities. We are not all the same.
19. The person with Autism cannot be expected to change aspects of their mind and body that are not in the realm of choice and control.
20. Parents want that realm of choice and control to be huge because they so strongly desire that their child has as much chance as possible to grow and become a functional and normal member of society. But this expectation can become a very heavy burden and can lead to a sense of failure and maladaptive patterns.
21. Expectations for children and youth with Autism need to be well formed and realistic. They are best based on an objective assessment of the person’s developmental capabilities with a long view to a child’s future potentials. This needs to be provided by a more senior person centred and positive behaviour support practitioner who does not rely on book knowledge, and who has a comprehensive experience in working with people and Autism.
22. Every child needs unconditional love and acceptance. Children with Autism who cannot give this love back in the same expressions or communications still need their parents to have this basic functional attitude.
23. The more realistic your goals and expectations for your child, the more you will celebrate your child’s milestones and accomplishments, and the more happy you will be.