Heidi Brandis

In response to Angela Shanahan’s misguided article in the Weekend Australian, I wrote this to the editor of the paper last night:

Dear Editor

Hoping you can assist - I’m in a quandary as to which of Angela Shanahan’s myriad misguided, incorrect, offensive and ignorant comments to address first? (“On spectrum of needs, NDIS should axe ASD”, 26 May).



Let’s address each one:

1. “Parental stress rather than the objective levels of the child’s physical or mental impairment seems to be the main element” (in defining disability).
   
   
   
   Yes Ms Shanahan, there is in fact extensive research to confirm that autism parents are chronically anxious, depressed and/or stressed. However this has absolutely nothing to do with the comprehensive, multidisciplinary assessment conducted over a number of hours and sessions by highly qualified, registered and experienced health professionals and specialist medicos, incorporating detailed information from education professionals. Here in Western Australia, diagnosis can only be made by a team comprising a developmental paediatrician (or psychiatrist if mental health conditions involved), a clinical psychologist and a speech pathologist. It involves direct observation of the child, feedback from school staff/treating health professionals/parents and others involved in the child’s life, administration of standardised developmental tests and a host of other tasks. This is a lengthy, expensive process with an inordinately long waitlist. Which brings me to:
   
    
2. “ASD usually is diagnosed after parents have doctor-shopped to obtain help with their children’s behavioural problems”.
   
   
   
   This is so impossible that frankly it’s laughable. For example we waited 15 months to see a developmental paediatrician (in the private system, the waitlist in the public system was considerably longer at the time). Can the author please enlighten me as to why we would spend so long waiting and to spend over $2000 to be told that our child had a lifelong neurological condition? If she wasn’t diagnosed with autism by that multidisciplinary panel does Angela think we would’ve waited another year and a half (and spent another $2000) to ask another doctor/panel of health professionals? I know hundreds of autism families who waited considerably longer than we did, all the while delaying early intervention therapy which could’ve helped in many ways, had they been able to receive a diagnosis sooner.
   
   
   
   Our child is not a “behavioural problem”, she has social and communication challenges which make every day of her life highly stressful and overwhelming for her. Ms Shanahan’s lack of compassion is astounding.
   
    
3. “Some advocacy groups have claimed at least one in 63 Australian school children has a formal autism diagnosis”
   
   
   
   This is not a claim by advocacy groups. This is a statistic quoted from the Centre for Disease Control in Atlanta, Georgia, USA based on their latest research (actually currently 1 in 59). The most recent Australian research identifies just over one in 100 Australian children are on the autism spectrum. This figure does not account for undiagnosed children and adults.
   
    
4. The terms “lower levels (of autism), intellectual handicap, severe autism” are all factually and politically incorrect. The term “handicapped” has not been used Australia for many years and is deeply offensive to many Australians, both with and without disability. The severity of autism on the spectrum is currently defined in relation to the amount of support required as level 1, 2 or 3. Ms Shanahan again demonstrates her ignorance through the use of inappropriate, offensive and inaccurate terminology.
   
    
5. Ms Shanahan‘s personal experience of having three children with a disability does not appear to have given her any empathy whatsoever for those with children with less overtly visible disabilities. Our children on the autism spectrum have sensory, motor, psychiatric, psychological, social and emotional dysfunction. Does that mean they are less “disabled “ than hers? Who made her the Disability Adjudicator? Sheer arrogance.

Ms Shanahan - you appear to require someone to educate you that our children on the spectrum are also extraordinarily intelligent, creative and wonderful people who may or may not require support from the NDIS; but should without doubt be eligible for support when and if it is needed.



Yours sincerely



Heidi Brandis

(Autism Parent, Occupational Therapist, Author of 2015 & 2018 ed Western Australian Autism Parents Handbook)