By convenor |

Mr David Bowen
CEO
National Disability Insurance Agency
GPO Box 700
Canberra ACT 2601

email: david.bowen@ndis.gov.au

Dear Mr Bowen,

Autism Aspergers Advocacy Australia (A4), the national grassroots advocacy group for autism spectrum disorder (ASD), is alarmed and disappointed by the National Disability Insurance Agency’s (NDIA’s) video on Facebook (see https://www.facebook.com/NDISAus/videos/594542027373310/ … a transcript is given below) about how its Early Childhood Early Intervention (ECEI) Approach is meant to work for autistic children. Disappointingly, this video shows that the NDIA continues to ignore/rejects expert advice and the peer reviewed research literature that defines best practice (and evidence-based) early intervention (EI) for autistic children (see http://a4.org.au/node/843).

The NDIA’s video features Michelle and her children (hopefully not their real names). While the following is critical of the video’s content, it is not intended to criticise Michelle who appears to be doing her best for her children. The NDIA is wholly responsible for the content of the video.

The video says Michelle’s sons, Jonathan and Harrison, are 12 years are 3 years old respectively. She says the boys have “developmental delay and autism”. What she means by “developmental delay” in unclear. The DSM-5 says Global Developmental Delay (ICD-10 F88) “diagnosis is reserved for individuals under the age of 5 years ...”.

The DSM-5 also says that a diagnosis of Autism Spectrum Disorder must indicate either with or without Intellectual Disability. In the DSM-IV (up to 2013), “autism” (more formally, Pervasive Developmental Disorders or one of the sub-types) would have been both boys’ primary diagnoses (on Axis-I) with intellectual disability (called “mental retardation” in the DSM-IV) as an additional diagnosis (on Axis-II).

In relation to intellectual disability and ASD, the DSM-5 says:

Appropriate assessment of intellectual functioning in autism spectrum disorder is essential, with reassessment across the developmental period, because IQ scores in autism spectrum disorder may be unstable, particularly in early childhood. (p40)

Apparently, the NDIS should help and encourage Michelle with updating Jonathan’s diagnoses and other assessments.

If Jonathan was diagnosed with “autism” by age 6 years, Michelle could have accessed an Autism Advisor (for impartial advice) and individualised EI for Jonathan via the HCWA program (HCWA did not offer/provide intensive EI for ASD). However, the content of this NDIS’s video suggests something has gone awry. Michelle may have not:

  • accessed specialist advice about EI for Jonathan’s “autism” available through the HCWA Autism Advisor service;

  • received accurate and clear advice from the Autism Advisors;

  • understood or remembered the advice she was given about EI for her autistic son;

  • heeded the advice on best practice EI for Jonathan; or

  • generalised the advice she was given about Jonathan and applied it to Harrison.

With her prior experience (or inexperience … perhaps she found HCWA too hard to navigate?) and numerous children with disability, Michelle is not an ideal example of a family with a young autistic child first encountering the NDIA’s ECEI Approach.

Following are some more specific concerns about this NDIA video.

  1. Early on in the video, Michelle says a couple of her children "are on the Stay Connected program with Lifestart". Google tells us nothing about this program. A4 has not found what this program is, and what its outcomes are for the autistic children.

  2. The second text insert in the video says "The NDIS is supporting Harry and Isabelle to access high quality early intervention support". What is "early intervention support"? If I ask Pubmed, it says "quoted phrase not found". What is the NDIA’s basis for its claim that the program Michelle’s children are accessing is “high quality” when the research literature does not appear to describe “early intervention support” at all?

  3. Michelle says that:

    1. “I feel like I’m a better mum than I was six months ago”;

    2. she feels she can “communicate with them [her children] better”; and

    3. she has come to “feel better and more confident in [herself]”.

The EI service Michelle (or any mother of a young autistic child) accesses should ensure that she understands and believes that she is a great mum. Clinicians and service providers must not undermine the confidence or self-esteem of mothers of autistic children. Is there evidence that she is now a better mum? Probably not. The better providers of services for autistic children recognise that parents, especially mums, usually know their children best … are usually the best parents they can be. There is no place for undermining mothers parents of autistic children.

One can expect that 6 or 7 months of ongoing input from a speech therapist would improve the children’s communication.

The NDIS focus of EI should be on the child, not on the parent(s). While it may help to consider the family context, EI must be about the child … creating a family centred approach is likely to be a distraction, especially when more than one child is involved.

We are keen to see the evidence base for a “family centred approach to help [autistic] children”.

We are deeply concerned that her children’s EI diminished her confidence and fed her doubts about her parenting (see http://a4.org.au/node/892). EI should not cause or let her feel that she and her parenting were inadequate or in anyway deficient. That is an unacceptable outcome for any ASD-related EI.

Research shows that ASD is not due to poor or sub-optimal parenting … the evidence is clear that most parents of autistic children raise normal children using precisely the same parenting approach. The “blame autism on the parents” or “refrigerator mother” approach to autism was debunked in the 1950s and 60s [see https://en.wikipedia.org/wiki/Refrigerator_mother_theory]. It is very disappointing that this discredited (and damaging) attitude is still in use today in Australia, and that the NDIA has is now promoting it (in this video, for example).

Clinicians with real training and experience with autistic children report that parents know their children best. Parents are generally the experts on their individual children; and proper clinicians recognise this. They do not tell parents their parenting of an autistic child is inadequate a) because that is rarely the case, and b) because it increases the risk of mental illness in parents.

  1. Melissa (hopefully not her real name), an OT, is the “key-worker” for several autistic children. Has Melissa been trained to supervise and manage best-practice programs for autistic children? As an OT in Australia, it would be unusual for her to have such training. Does Melissa know what is best-practice for autistic children? Does Melissa have experience delivering best-practice EI for an autistic child? Does Melissa’s team include qualified behavioural expertise?

  2. What evidence-based EI methods does Melissa’s team use with these autistic children? What are the baselines for these intervention methods? Was baseline data taken for each child? Where the expected improvements achieved? What measurements were taken, what measures were repeated and where are the measurements reported?
    Where is the description of this “Lifestart” program? Where are outcomes described?

  3. The NDIS’s review of “good practice” in EI for autistic children does not suggest “playgroup” is effective early intervention for ASD (see https://www.ndis.gov.au/html/sites/default/files/Early%20Intervention%20for%20Autism%20research%20report.pdf accessed 29/9/2016). Has Michelle made informed choices about EI for her children? Does “learn[ing] how to play and interact with our children” in a playgroup and a few home visits meet the needs of autistic children? There are no indicators offered/provided.

  4. Is the “main aim” of the NDIS and its ECEI approach “to sort of upskill the parents, giving them the strategies to work with their children”. Can Michelle deliver 20+ hours of intensive ASD-specific EI for all her autistic children? Isn’t the legal objective of the NDIS to upskill children with disability, not their parents, so the child can function and participate generally in the community … rather than having their dependence on their upskilled parent(s) increased?

  5. On what basis does Melissa, an OT, claim Harrison made “some really big improvements in his communication”? How were these measured, detected and reported? Is it the role professionally of an OT to measure and report improvements in communication? How is Harrison’s natural development (we are told that he has developmental delay, not developmental cessation or regression) distinguished from his development through intervention?

  6. Michelle says “we’re mostly using visuals so he can communicate to me what he wants to eat”. There is a fair bit of literature around visuals (augmented communication, etc.) in association with food (a primary reinforcer). But is the opportunity being taken to enhance Harrison’s expressive language and develop it to a point where it becomes self-reinforcing? How is generalisation going (that is, communicating other – not food-related – messages with other communication partners)? Should “the visuals” include text (phonics) prompts?

She also says “… instead of just screaming at me because I don’t understand him”. This suggests/indicates that screaming was being reinforced. Is this only being tackled in respect of food requests … or is there a more general approach to screaming to communicate being addressed?

At one point, Michelle says “No Harry, you have to wait your turn please”. Is this meaningful language for Harry? Does he understand this and similar instructions?

  1. In relation to Isabelle’s social skills improvements, how are these measured? How do they relate to normal/natural development? Is this another area of expertise for an OT?

  2. There is little evidence and no convincing case that the NDIA’s ECEI Approach is the best, or even a good, approach to EI for autistic children.

  3. Michelle’s statement that “One of the best things about early intervention is that you don’t need a diagnosis before you start getting help, or even at all” is very concerning. Is Michelle qualified to provide this information? Do experts with knowledge of ASD agree that “you don’t need a diagnosis”? Does she mean that a child never needs a diagnosis of ASD … because ASD experts, especially many of those who have a diagnosis, do not agree.

  4. A4 largely agrees with a “do not delay” approach to EI for autistic children … providing that EI is safe and evidence-based best-practice … that is, intensive individualised ASD-specific EI. We also note that pre-mature “inclusion” (placement in mainstream service settings without sufficient preparation and support) has proven unsafe (damaging) for some autistic children.

  5. Yes, we all hope that autistic people will “get the most out of life and benefit from as much as possible” from the NDIS. The information provided does not show that what Michelle and her children are accessing is “working” (which should mean delivering an optimal outcome for her children).

The claim that an autistic child does not or may not need a diagnosis is controversial. The NDIA should be very clear that they adopted such a controversial approach.

It is crucial that families understand that the information and advice in this video is contrary to scientific evidence, advice from people with training, experience and expertise in specific EI for autistic children … and advice from many autistic adults. The people giving advice here do not appear to have the knowledge and experience that they should have in order to give such advice.

The NDIA’s approach to diagnosis and early intervention for ASD, as described in its video on Facebook, is unacceptable.

Please can we meet to discuss the issues and A4's concerns? I can be contacted via email or on 04XX XXX XXX.

Sincerely
Bob Buckley
A4 Convenor

6/10/2016

cc: Mr Bruce Bonyhady, Chairman of the Board, bruce.bonyhady@ndis.gov.au
--
Bob Buckley
Convenor, Autism Aspergers Advocacy Australia (A4)
website: http://a4.org.au/

A4 is the national grassroots organisation advocating for autistic people, their families, carers and associates. A4 is internet based so that Australians anywhere can participate.

“The first step in solving any problem is recognising there is one.” Jeff Daniels as Will McEvoy in The Newsroom.

 

Video Transcript

Title: The NDIS Early Childhood Early Intervention Approach

Michelle: Emily is my little social butterfly. John is so creative and imaginative. Harrison is quite musical. And Isabelle, I think she will make a fantastic CEO one day.

I’m Michelle and I’m the mother of Jonathan who is 12 and has a developmental delay as well as autism. Emily who is 8. Harrison who is 3 and has a developmental delay and autism … and Isabelle who is 2.

Insert: The NDIA has worked with leading practitioners and researchers to create an evidence based, family centred approach to help children achieve their potential.

Isabelle and Harrison are on the Stay Connected Program with Lifestart and they come to the playgroup for early intervention, as well as home visits for early intervention. The playgroup is run weekly and we come as often as possible and have been for about 6 or 7 months.

The playgroup is run by a mix of Speech Therapists, OT’s, Psychologists and Physiotherapists, as well as some volunteers and some students.

Insert: The NDIS is supporting Harry and Isabelle to access high quality early intervention support.

The early Intervention here has been great because it not only helps my children – it helps me get that confidence to be able to communicate better with them, to know what I’m doing. I mean the only education I have on special needs is living it.

I feel like I’m a better mum than I was six months ago because now I have the skills to help my children, communicate with them better. I definitely feel better and more confident in myself and it’s great to see the kids are flourishing from that as well.

Melissa: My name is Melissa. I’m one of the occupational Therapists here at Lifestart Nepean, so I’m Harrison and Isabelle’s key worker.

Michelle: At this playgroup we learn how to play and interact with our children. Our main aim is to sort of upskill the parents, giving them the strategies to work with their children …

Melissa: With Harrison I’ve seen some really big improvements in his communication.

Michelle: We’re mostly using visuals so he can communicate to me what he wants to eat. He’s now sort of getting better at pointing and regulating himself instead of just screaming at me because I don’t understand him.

In the background (Michelle speaking in a complex group setting): “No Harry, you have to wait your turn please.”

Melissa: In terms of Isabelle I’ve seen some improvements in her social skills.

Michelle: Early intervention has helped us as a family communicate better with one another and that in turn sort of makes us enjoy each other’s time a bit better and we can love each other a bit more instead of being so frustrated all the time. One of the best things about early intervention is that you don’t need a diagnosis before you start getting help, or even at all.

…

If you’re considering early intervention for a developmental delay or for any reason don’t hesitate. Get on it as soon as you can because the earlier the better.

My hopes are pretty simple using this early intervention, I just want my children to get the most out of life and benefit from as much as possible – and so far it’s working!

Previous letters/emails from A4 to the NDIA about early intervention for autistic children can be seen at:

The NDIA's response (3/11/2016) to this email can be seen at http://a4.org.au/node/1329.