• The Autistic Realm Australia Inc.

Autism Consultation Responses - TARA Tips




The NDIS has asked for consultation on their proposed changes to Autism "early intervention".


We believe the questionnaire is full of leading questions that push respondents to answer in a specific manner, based on the way they are framed. These leading questions contain information that the NDIS survey intends to confirm rather than to get a true and unbiased answer to their questions.

HOW TO :

The Autistic Realm Australia has created this set of responses to assist you in having your say on the proposed changes to the National Disability Insurance scheme.


Most questions have more than one choice of response - short and long ones. The long ones may include links to research studies that refute the claims the NDIS used to base the proposals on.


Use these responses as a starting point, as a reference or in full. Personalise them to reflect your own or your families story .


The Autistic and Autism communities must come together to collectively voice our condemnation of these changes.


As it appears that submissions are not limited to one per person voice your disapproval as many times as you can and support participants, family or friends in doing this.


Please share this resource far and wide as together we can make real change and ensure the NDIS remains as an Insurance scheme and not another form of welfare.


QUESTION 1:


The Autism CRC’s research along with other evidence and research are being used to inform future NDIS operational guidelines, and increased transparency on reasonable and necessary supports. Some of the other considerations include:

  • key principles for autism interventions

  • standards for the delivery of autism interventions.

Which of these would you use to make decisions about accessing best practice interventions (or services) for children on the Autism Spectrum?


NDIS website

NDIS Operational guidelines

Participant decision making guides (not yet developed)

My usual NDIS or NDIS partner contact

Autism organisations or peak bodies

None of these


RESPONSES:

  • None of these


QUESTION 2:


Where else would you like to be able to find the information you need to make decisions about accessing best practice interventions (or services) for children on the Autism Spectrum?


RESPONSES:

  • As an Autistic parent of Autistic children, I source my information from those with lived experience e.g. other Autistics. Autistic led advocacy groups that have the autistic child's best interests in mind not their own financial profit. E.g., The Autistic Realm Australia, ASAN and Reframing Autism.

  • Autistic led organisations

  • Autistic professionals who have both lived and professional experience and qualifications.

  • Research articles that include autistic participatory practices

  • I do not believe that independent assessors, NDIS staff or LACs are qualified or experienced in this area and prefer to rely on the professionals involved in my child’s care.

  • As an autistic parent / parent of an autistic child I am concerned about some the therapies that are ‘seen’ as best practice such as ABA or related therapies that do not have real evidence to back them and are seen as abusive by the autistic community. And from evidence and research outside the NDIS which has a conflict of interest if they proceed with the proposed changes. Autism is not a behavioural disorder. It cannot be “improved” by behavioural interventions.


See this paper: Eg, Sandbank, M., Bottema-Beutel, K., Crowley, S., Cassidy, M., Dunham, K., Feldman, J. I., Crank, J., Albarran, S. A., Raj, S., Mahbub, P., & Woynaroski, T. G. (2020). Project AIM: Autism intervention meta-analysis for studies of young children. Psychological Bulletin, 146(1), 1–29. https://doi.org/10.1037/bul0000215 Eg, Sandbank, M., Bottema-Beutel, K., Crowley, S., Cassidy, M., Dunham, K., Feldman, J. I., Crank, J., Albarran, S. A., Raj, S., Mahbub, P., & Woynaroski, T. G. (2020). Project AIM: Autism intervention meta-analysis for studies of young children. Psychological Bulletin, 146(1), 1–29. https://doi.org/10.1037/bul0000215 "When effect size estimation was limited to studies with randomized controlled trial (RCT) designs, evidence of positive summary effects existed only for developmental and NDBI intervention types. This was also the case when outcomes measured by parent report were excluded. Finally, when effect estimation was limited to RCT designs and to outcomes for which there was no risk of detection bias, no intervention types showed significant effects on any outcome. (PsycInfo Database Record (c) 2020 APA, all rights reserved)”

The intervention chosen by the client should be evidence based - but the client must be given the choice to provide that evidence themselves - peer reviewed though. The Whitehouse report should not limit access to only those therapies or interventions it reviewed. There is a blatant conflict of interest in relying on this paper as it was commissioned by the NDIA. Compared to the paper by Sandbank, M., Bottema-Beutel, K., Crowley, S., Cassidy, M., Dunham, K., Feldman, J. I., Crank, J., Albarran, S. A., Raj, S., Mahbub, P., & Woynaroski, T. G. (2020). Project AIM: Autism intervention meta-analysis for studies of young children, it is both incomplete and biased. https://www.researchgate.net/publication/337517081_Project_AIM_Autism_Intervention_Meta-Analysis_for_Studies_of_Young_Children

QUESTION 3: