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The Stakeholders in Autism

  • Treatment of children with autism is now a multi-billion dollar industry.

  • There are many stakeholders involved

  • The majority of autism sites have prominently displayed DONATE  signs.

  • Research into Autism has seen little progress

  • Prevention does not appear as a major role for the sites (see ASPECT)

  • So where does the money go?

  • Prevalence in US increased from 1 in 150 in 2000 to 1 in 68 2014

  • Autism the fastest-growing Developmental disability.

  • Autism costs the US 2016 $91 billion, 2019 US$236-262 billion, estimated 2025 $461 billion, 2030 half-a trillion dollars, possibly more.

  • In Australia in 2023, the cost to the NDIS was $42 billion. This for a condition that is both preventable and treatable.

Stake-holders in Autism

Funds from "Donations" are either from Government Grants or Fundraising.

These individuals would rather take money from the parents of the kids with autism, than help to identify cause or cure.

Identified Expenditure on autism.

  • Early Intervention and Treatment.

  • Paediatrician

  • Behaviour practitioner,

  • Sleep specialists.

  • Education specialists

  • Child Psychologist/psychiatrist>

  • Speech pathologist.

  • Occupational therapist.

  • Physiotherapist

  • Personal Trainers.

  • Training, Education and Workshops.

  • Community Service Partnerships.

  • Social workers.

  • Respite and Camps.

  • Social Skills and Vocational Training.

  • Outreach and Fundraising.

  • Operations.

  • Therapists

  • Nutritionist/dieticians

Cost of Autism

Autism society in the US calculated an annual cost of $90 billion in costs for autism in 2017, $200 billion 2019, >$500 billion 2032

In Australia, the cost fo autism to the National Disability Insurance Scheme is A$42 billion in 2023. Potentially treatment of autism has the highest employment rate of any profession in Australia.

Annual costs for a child over 18 are around $50,000, with this rising to $80,000 if the child has extra needs.

THESE ARE THE COSTS TO MISTREAT AUTISM!!

Costs include

  • Research

  • Insurance costs

  • Non-covered expenses

  • Medicaid waivers for autism

  • Educational spending

  • Housing

  • Transportation

  • Employment

  • Therapeutic services

  • Caregiver costs

  • Before and After School care $69/ hour if NDIS (Australia) $82/hour if non-NDIS

  • Unnecessary supplements, homeopathic medicines, "Fake" therapies.

Those living off it

  • Consultants

  • Educators

  • Childcare providers

  • Speech language pathologists

  • Occupational therapists

  • Psychologists

  • Respite carers

  • Behavioural consultant

  • Social Workers

  • Special Needs Schools

  • Personal Trainers (ie weflex.com.au)

  • Parent Mentors

  • Therapists

  • Nutritionists

  • State Autism Centres Directors - Board-members

  • Researchers -ie Autism CRC Australia 65 Profs, AsPros, PhDs, without naming technical staff. ARI - 8 Staff, 7 Board of Directors, 16 extra on Scientific Advisory Panel 14 years research - no results

  • THERE ARE MORE PEOPLE LIVING OFF IT THAN DYING FROM IT!

National Disability Insurance Scheme (NDIS)

In order to get support for parents and children with Autism, a preventable cause of developmental delay, terms such as "mentally retarded" or "developmental delay" have been enthusiastically replaced by "Intellectual Disability", and "non-neurotypical". The result is that these individuals are now covered by institutions such as the National Disability Insurance Scheme, where support for Individuals with autism and for carers constitutes up to 30% of the annual budget. This for a condition that is both totally preventable, and treatable. Hence "Vitamin B12 deficiency in infancy is a rare but treatable cause of developmental delay and neuronal regression". Head of the NDIS in Australia CEO Martin Hoffman $720,480 pa. 6.8% of children between 5 and 7 are on the NDIS. Payments by the NDIS were $28.6 billion in 2021-2022, $42 billion 2023. June 2022 183,494 people with autism on the NDIS. This was in comparison to 357,00 children in the age group on the NDIS. Hence roughly 50% of individuals on the NDIS had a preventable condition. The misdiagnosis of vitamin B12 deficiency in these children costs the economy over $1 million over 20 years.

Hear about how to access it Nicole Rogerson on ABC's 'Matter of Fact' - YouTube

Position Statement ASPECT

"Aspect does not focus on curing autism, because for many Autistic people autism is an important part of who they are and they don't want to change or be cured" "Aspect is more interested in research efforts that will support people on the autism spectrum and their families and carers to realize, and reach their goals and aspirations. For examples of the many ways we do in fact support and help individuals on the autism spectrum, please see our website on how Aspect assists with diagnosis,  our  Research, and the many services we provide to assist individuals and their families". The inevitable consequence of a such a position is that this approach will involve "Caregivers for Life", with the resultant burden on the caregivers and families. It also suggests another scenario " there is nothing wrong with being on the spectrum, you and your family get used to it and so you become even more special. Hence, we don't want to change that, what we like to do is to get you to pay us so that you can accept that, I guess it depends upon which aspect you want to look at". Further, try to convince a mother who has a child in potty training, speech, and physical and mental disabilities, that she doesn't want the child to be cured. Some parents are so worried about the future of their children that they are terrified that if they die before the child that the child will grow up in a group home that mistreats the child, doesn't feed or change them or makes fun of them. They are worried that the child will be subject so some form of physical, verbal or emotional abuse, and live a life that is sad, alone, with no friends or chance of marriage. Surely Organizations such as ASPECT can do better than no focusing on curing autism.

Supposed Progress on a condition that is due to Nutritional Lack

  • $3 billion increase in authorized federal research funding for autism US.

  • $550 million investment in primarily scientific grants

  • Creation of one of the world’s largest open access autism genomic database

  • Over $9 million in community autism-related grants and scholarships

  • Autism Treatment Network of 11 top medical centres and facilities providing cutting-edge clinical care

  • More than 18 million people have received free autism information and resources

  • in Australia the Autism CRC has spent more than $160 million on autism research in the period 2013-2021, with not one dollar being spent on treatment or prevention.

Autism Speaks - Financials - Expenses

Goal - "Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families. We do this through advocacy and support; increasing understanding and acceptance of people with autism; and advancing research into causes and better interventions for autism spectrum disorder and related conditions."

2022 - $92,864,935

2021 - $73,317,338

2020 - $88,917,015

2019 - $13,208,406

2018 - $64,236,527

2017 - $76,142,042

Total 2017-2022 $408,686,263

Autism Awareness Australia - Financials - Expenses

Our goal is simple: to improve the lives of all Australians on the autism spectrum and the families who love them. We ensure autistic individuals, and their families, have access to free, credible, evidence-based information, resources and tools to empower them to support themselves or their loved ones on the spectrum. We also provide targeted educational programs to families, professionals and the broader community. We support inclusion for people on the autism spectrum… and we have some fun along the way too. Nicole Rogerson CEO.

2021-2022 Salary 400,670 - Employee benefits 214,730 Board members 7. Total costs 814, 371. Over 3/4 of budget was to pay board and employee benefits.

Business Model

Nearly all the foundations examined have the same business model. They make a declaration that there is no prevention or cure for autism. They get someone who has a child with autism to be on the board, then they raise funds, the majority of which go to paying the members of the board or consultants, and to pay the medical costs of the person on the board who has the child with autism.

Organizations Contacted with no Response

Every Organization listed below has been contacted and informed of the recent developments in the cause, potential cure, and prevention of autism. NOT ONE ORGANIZATION HAS RESPONDED.

Geneva Centre for Autism - https://www.autism.net Annual Budget $12,000,000 2018

Autism Speaks Canada - https://www.autismspeaks.ca/ Annual Budget $3,550,000 Aim "We seek to deepen our understanding of autism to enhance the lives of people on the spectrum. Through collaboration with leading autism researchers, clinical and healthcare providers, and autistic people and their families, we’re a catalyst for life-enhancing research breakthroughs and genetic discoveries, which will enable more personalized treatments and therapies."

Autism Canada https://autismcanada.org/ Annual Budget $342,000

Autism Society of North Carolina https://www.autismsociety-nc.org/ Annual Budget $24,793,198 65,000 with ASD in NC USA 1.5 million

South Carolina Autism Society https://scautism.org/ (christina@scuatism.org) No Data given

Texas Autism Society https://www.texasautismsociety.org/ Chris@texasautismsociety.org No Data given in Texas Jacquie@texasautismsociety.org

Autism New Jersey https://www.autismnj.org/ 1 in 45 kids Annual Budget $2,392,000 jbozarth@autismnj.org

Autism Society of Minnesota https://www.ausm.org/ 1 in 40 kids. Higher in Somali children 3.8% - see https://www.mprnew.org/story/2018/04/26/autism-at-elevated-rates-in-twin-cities-kids newsroom@mpr.org info@ausm.org

Autism Tennessee https://autismtennessee.wildapricot.org/ 19 staff just on Board Membership Member 5 "Staff" $15/45/115 Professional member $30/60/120 Provider Member $75/150/275 support@autismtn.org Vision: Enrich the lives and experiences of individuals on the autism spectrum, their families, and their surrounding community through support, advocacy, and education. NOTHING ABOUT Cause and prevention and treatment! babs@autismtn.org

Autism Society of Washington https://autismsocietyofwa.org/v1/ The mission is to improve the lives of all affected by Autism Spectrum Disorders.8 Board members. Goals Achieve Financial Stability, Clarify mission and make it visible to people. Establish regular programming that is consistent with on-line statement.. Strength relationship with Chapters. Increase Membership Numbers. Define/Develop Organizational Structure. info@autismsocietyofwa.org

Firefly Autism Home (fireflyautism.org) 22 board members, one of which was a kindergarden teacher, the rest seeming to be in tax, and legals. Supported by a leadership team of 10. No Budget posted.

TACA https://tacanow.org Lisa Ackerman founder. Goal "Provide education, support, and information to parents to help their children diagnosed with autism be the very best they can be, with the hope of recovery". Revenue US$2,046, 474 Expenses Salaries Salaries $921,841 - Professional fees - $175, 507.

ABA link - Evidence based early intervention  enquiries@abalink.com.au Helping children and adolescents reach their full potential through Early Intensive Behavioural Intervention Therapy. Team of 9. NB much of the costs are born by the NDIS NB, also receiving money for "training" $600 per trainee.

Raising Children Network Australia https://raisingchildren.net/autism/learning-about-asd/assessment-diagnosis/asd-diagnosis Promoting paediatricians, child psychologists/psychiatrists, speech pathologists, and occupational therapists. Annual cost A$50,000 for over 18.

Westmead Feelings Program https://www.acer.org/au/westmead-feelings-program/ Promoting Facilitators and training

Telethon Kids Organization Professor Andrew Whitehouse Telethon Kids Institute 9 Board Members, 8 scientists, $107,889,119 budget in 2022 for a condition that is both treatable and preventable

Autism CRC https://autismcrc.com.au $160 million in period 2013-2021. 63 researchers, and 10 members on the board.($1.37 million 2013-2021)

Autism Centre of excellence https://www.griffith.edu.au/arts-education-law/autism-centre-excellence Raised $125 million 2024

Autism Awareness Australia Autism Awareness Australia - Empowering autism families Directors Annual Budget 2021 $517,855. 9 Directors. Aim: "to improve the lives of all Australians on the autism spectrum and the families who love them"

Autism SA https://autismsa.org.au/ No response

Reframing Autism About | Reframing Autism 7 Directors Annual Budget $520K 2021

Centre for Disease Control https://www.cdc.gov/DCS

Garvan Institute of Medical Research - Dr Weatheritt Our autism research | Garvan Institute of Medical Research Despite the unequivocal evidence that autism is due to nutritional deficiency, Donations still pour in for genetic analysis.

Luke Priddis Foundation Home - Luke Priddis Foundation 7 board members, No Staff identified.

May Institute Our Organization - About May - May Institute Expenditure $142,222,325 2022."May Institute proudly serves individuals across the lifespan with autism, developmental disabilities, intellectual disabilities, neurological disorders, and behavior disorders to promote independence, choice, dignity, and respect. We provide compassionate and caring educational, therapeutic, habilitative, and consulting services grounded in evidence-based practice." No research into prevention or cure, despite a huge budget

AMAZE Amaze — Creating an autism inclusive Australia Those Living off it. Jim Mullon CEO, Tina Chronis CFO, David Tonge COO, Alexus Lazarus-Priestley CCO, 7 members of the board, Prof Warren Bebbington, Dr Jason Coonan, Peter Heard, Kathy Isaacs, Gavan Nolan, Professor Nicole Rinehart, Check Tan. Interestingly, AMAZE does not publish their annual expenses.

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