Understanding autism

James Pascoe’s parents reluctantly share their story of their autistic son’s plight. They asked for help but didn’t get what they asked for……

A child becomes an adult when they reach the age of typical maturity yet they will always remain a child in the eyes of the parent regardless of their age. A parent only hopes for the best for their child.

When a parent of an autistic child needs a rest from round the clock care, where does one turn? At what point to they admit that they need help? Does one have to reach desperation before asking? Or does one troop on stoically without complaint? Is it embarrassing to admit that one needs a break from family? Is equating needing a break admitting failure? Why is that? Why do we need to pretend that all is well all the time? We are human after all!

Who understands their child they way they do? Who will take the time to care, to find out the best way to approach and interact with their child? Anyone on the Autism Spectrum or anyone with a family member or friend on the Spectrum will know one person on the Spectrum. Each person will have different ways of interacting with the world, some will have special interests, some will be verbal, others not, some reject touch, some will crave it, and so on. Flexibility and understanding is paramount. What works well for one may not work for the next autistic person.

What is the answer for respite care for those on the Autism Spectrum and their families?

“James Pascoe, diagnosed with Autism Spectrum Disorder when he was two years old, spent his 21st birthday chained to a bed after he was taken to The Northern Hospital, Victoria in Australia on 21 November…….”(1)
Read more.
(1) 6 December 2014, New Zealand Herald

The comments section of the Daily Mail article is mixed from pro shackling to anti shackling….

Sydney, Australia, “There is funding for children but for autistic adults (there is a myth out there that children can grow out of autism – it is a myth) there is nothing and the parents are left to fight the cause. It is exhausting. I have been there and still am.”
[450 likes, 18 dislikes]

Melbourne,  “As a nurse of 25 years experience I would assume that he is a danger to himself or others and that is the reason why he is shackled. If a person is shackled then there is a CPO (constant patient observer) that is assigned to 24 hours a day. Hourly checks are made regarding the condition and the shackles are not too tight etc. A doctor has to sign the form to state the reason why he needs to be shackled. So I would say that he is treated better than a prisoner! It just minimizes the assaults that we have to endure throughout our career.” [520 likes, 246 dislikes]

Sydney, “Prisoners have human rights. Disabled people don’t. State and federal governments are getting closer to treating disabled people like they were dealt with in ancient Sparta.”  [270 likes, 67 dislikes]

Crowded House – Better Be Home Soon


2 thoughts on “Understanding autism

  1. In the U.S. it all comes down to money: ONE Tomahawk missile costs 1.5 MILLION dollars. We choose weapons and war (killing humans) over caring for people.

    From the Centers for Disease Control:

    •It is estimated to cost at least $17,000 more per year to care for a child with ASD compared to a child without ASD. Costs include health care, education, ASD-related therapy, family-coordinated services, and caregiver time. For a child with more severe ASD, costs per year increase to over $21,000. Taken together, it is estimated that total societal costs of caring for children with ASD were over $9 billion in 2011.

    •Children and adolescents with ASD had average medical expenditures that exceeded those without ASD by $4,110–$6,200 per year. On average, medical expenditures for children and adolescents with ASD were 4.1–6.2 times greater than for those without ASD. Differences in median expenditures ranged from $2,240 to $3,360 per year with median expenditures 8.4–9.5 times greater.

    •In 2005, the average annual medical costs for Medicaid-enrolled children with ASD were $10,709 per child, which was about six times higher than costs for children without ASD ($1,812). •In addition to medical costs, intensive behavioral interventions for children with ASD cost $40,000 to $60,000 per child per year.

    MY COMMENT: It’s estimated that 40% or more of people in U.S. jails and prisons have a mental illness or disability – we just lock people up for being “defective.” A high percentage of homeless people are war veterans who have been abandoned by the government – suffering from PTSD and substance abuse.

    • Much of life comes down to being able to afford. 😦
      That’s a lot for a family to cover annually. No wonder people are so patient/persistent to get their child diagnosed early on. Makes sense.

      The abandoned war veterans have always bugged me. And to clarify that I mean their poor treatment has bugged me. They are abandoned when they need help the most. Coming back to a normal life after combat must be too much to bear at times. Once their duty is done they are forgotten, remembered once a year if that. They deserve so much more. We feel safer because of the stability of our countries.

      Mental health institutions are closed down through lack of budgeting and their patients are rehabilitated into the community. For some it is suitable for others it is a disaster waiting to happen. Social workers don’t have the time follow up on cases for those in need and the work loads are not getting any lighter. People’s lives don’t seem to be getting less complicated.

      If we were able to manage relationships better then there would be no need for conflict, power abuse or wars.

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