Why I support the Inklings pre-emptive intervention program

By Helen Said, Autistic advocate

 

Seven hundred families in Western Australia are going to take part in a trial of the Inklings pre-emptive intervention program. The babies concerned are between 6 and 18 months old and have a high likelihood of being Autistic. The 10-session Inklings Program uses short videos of a caregiver interacting with their baby to help them to better understand the different ways that their baby communicates their thoughts, feelings and needs. With the guidance of a trained practitioner, caregivers will learn strategies to build on their own strengths as a responsive communication partner for their baby.

 

I support the Inklings pre-emptive Intervention program for Autistic babies. I am an Autistic advocate and co-founder of Neurodivergent Labor (formerly Spectrum Labor). I have campaigned to end disability discrimination in the migration process and to count Autistics in the National Census. I hold a Bachelor of Science Degree, I am an alumni of Reframing Autism’s inaugural Certificate course in Autistic Welfare for Autistics, an Autistic Advisory Group member with the Childhood Autism Phenotype research team, the mother of two neurodivergent adults and a longtime tutor to neurodivergent students.

 

I accept that there are differences of opinion about Inklings within Autistic spaces such as Neurodivergent Labor and Reframing Autism and I welcome informed, respectful discussion. This blog is my own personal opinion and does not represent the viewpoint of any group.

 

Some Autistic activists correctly point out that the research underpinning Inklings was not co-designed with the Autistic community. This is because in 2010, when the Inklings manual was written, co-design and development of research/programs with Autistic people was not a feature of the Autism landscape.

 

To meet contemporary expectations, a research team that included both Autistic and non-autistic colleagues has subsequently conducted a worldwide consultation of Autistic and non-autistic adults regarding very early supports. Approximately half of the participants were from Australia, with other participants from the UK, US and other countries. 238 adults (128 Autistic and 110 non-autistic) were interviewed, making this the largest consultation on a support program ever conducted.

 

The consultation found strong agreement with the key aspects of the Inklings program. For example, the overwhelming majority of autistic adults, more than 80%, agreed or strongly agreed with the key techniques of the Inklings program. These research findings are currently before the publishers.

 

How do I know this if the research is not yet published? I know the researchers concerned as I have worked with them in Autistic advisory groups on other research projects. I knew of this research and, when I heard some people discussing Inklings, I asked the researchers to share some of their findings with me.

 

For me, supporting very early intervention is personal. Twenty-five years ago, when I knew nothing about Autism, I began noticing that my baby daughter was physically inactive and wasn’t reaching her developmental milestones. All my reading and research convinced me that I needed to act quickly to engage, exercise and stimulate my daughter so that she could catch up and develop mentally and physically during her earliest formative months, when the brain has the greatest neuroplasticity. We saw several specialists, one of whom labelled my daughter “physically and mentally disabled”, and we were put on waiting list after waiting list for early intervention services. Somehow, I begged and bulldozed our way into therapy when she was just 14 months old, before she had received any official diagnosis.

 

The advice I received from these therapists was very similar to that which is now being offered to parents undergoing the Inklings pre-emptive intervention program – look for opportunities to interact and communicate with the baby, engage in imitation and other games.

 

Like any mother, I felt pressured to have the perfect baby and appear perfect, and the advice did initially make me feel as if I had somehow not given my baby the very best. Looking back, I am glad I put these feelings aside and acted on this advice.

 

It takes a village to raise a child and no mother can be a village. Back in the days of extended families and tribes, young babies naturally interacted with many more relatives, offering greater exposure to different personalities and devoted family elders who had a wealth of experience in bringing up children. I believe the extended family environment of yesteryear helped children’s early social development. These days, stressed parents, who often haven’t had prior experience with young babies, are expected to deal with children’s early developmental issues alone. The advice of knowledgeable, non-judgemental therapists can be very helpful and supportive.

 

My daughter is now a university graduate, she studies and works part time, has a boyfriend, a circle of friends and drives a car. We both received Autism diagnoses when she was a teenager. I have faith in the early support and advice we were given. I believe proactively seeking advice about quality parent-child interaction and other therapies, at the earliest possible age, is the main reason why my daughter defied early predictions about her physical and mental capabilities. We are both proudly Autistic and socially quiet, happy people who go out, work and study, have friends and enjoy our Autistic passions. Neither of us experience mental health issues or engage in unhealthy masking.

 

The researchers concerned have given me the following information in response to my questions:

 

1. Is Inklings like ABA?

·         It is not based on Applied Behaviour Analysis (ABA) principles in any way.

·         Inklings is entirely child-led (as opposed to parent led), meaning it guides parents to follow the natural interests of the child, rather than conditioning the baby to engage in interests or behaviours that are not natural to the child.

·         The program does not aim to change a baby’s behaviours in a more ‘normal’ or neurotypical direction. Rather, it works towards understanding and appreciating neurodivergent communication and thereby promoting more enjoyable and meaningful interactions.

·         Inklings does not force babies to make eye contact or to engage in any behaviour that is not natural for that child.

 

2. What is the science behind Inklings?

• Inklings has the highest quality evidence available for a social communication program in this age group.
• Two clinical trials have followed the children up to 2 years after the end of receiving the program, and demonstrated its safety and efficacy.
• No other program for this group of children has this level of evidence backing it.

 

3. Who is Andrew Whitehouse?

* He is a university professor and director of CliniKids at Telethon Kids Institute, who help run the Inklings program

* He wrote the National Guideline for Supporting Autistic Children. This clinical guideline was written in collaboration with autistic adults, and now defines best practice in Australia.

* He also tries to change the way that Autism is discussed in the medical/scientific literature and wrote this paper with Autistic colleagues: 

https://www.sciencedirect.com/science/article/pii/S0166223622001667

*  Andrew Whitehouse has never personally received any money for Inklings, nor will he ever

 

 

 

Babies can’t mask and very early intervention does not lead to masking. Inklings does not stop Autistics having strong abilities and interests. Pre-emptive interventions can help children more effortlessly enjoy interacting – this could help children settle at school, feel happier and more confident and make friends without feeling the need to mask. I am hopeful that improved social confidence could also help our daughters see through exploitative men, when they grow up, and avoid abusive relationships.

 

I am grateful for the work that has been done to expose the anguish of living life behind a mask, especially for Autistic women. I am indebted to the many Autistics who have encouraged us to drop the mask. There have been times in my life when I did feel pressure to mask – in front of relatives who expected me, as a woman, to be an appearance conscious ornamental clothes horse, amongst co-workers who demanded that I chit chat and dumb down to look like “one of the girls.” I look back on these episodes as low points in my life that taught me what I don’t want to be.

 

While opposing masking, I respectfully suggest that there is such a thing as bending the stick too far the other way. Social learning, as opposed to masking, helps us to understand the world around us and find our own way in life. When we pick up social knowledge that we may wish to use in various situations, this does not lead to mental health problems. Albert Einstein surely used some social knowledge to teach students and promote his theories. Greta Thunberg clearly uses some social knowledge to help save the planet. I believe that Autistics who pick up and use some social know-how, to pursue their Autistic passions, are happier and more successful. Autistics have strong skills and abilities that shouldn’t go to waste just because of social anxieties. It’s a lot easier to develop some level of social ease in our earliest formative years and this is where I feel pre-emptive intervention could be helpful.

 

There are very few older Autistic advocates and not a lot of research into the needs of older Autistics. What we do know is that older Autistics are more likely to develop dementia. Naturally, this concerns me as an older Autistic. The best advice available for any older person to avoid dementia is to maintain a healthy lifestyle, remain socially connected and keep challenging yourself mentally and physically. It’s easier to develop habits of the mind like more mental flexibility and social confidence when you are extremely young. I am hopeful that pre-emptive interventions can improve quality of life for Autistics throughout all our life stages.

 

The roll-out of pre-emptive intervention therapies should go hand in hand with the implementation of State and National Autism Strategies and changes in attitudes, education and employment practices. More acceptance, accessible environments and job opportunities, together with the best possible early learning, will help us live our best lives.

 

Autism diagnostic practices changed with an awareness of female Autism presentation. The presentation and identification of Autism may change again with widespread access to very early interventions and the elimination of discrimination and trauma in schools, society and workplaces. We will always be part of the Broader Autism Phenotype but some Autistics may become less dependent upon the NDIS. Autistics have long argued that we are disabled by a world that wasn’t designed for us and we should welcome empowering changes.

 

Looking back to twenty-five years ago, when my daughter and I first began our early intervention journey, my only criticism is with the amount of red tape and delay in getting into an early intervention program. This meant that we couldn’t get the advice and support we needed straight after her rather worrying 8-month-old developmental assessment, and take advantage of the earliest formative months. Inklings fills that gap and I support this program in the interest of giving all Autistic children the best start in life.