Hearing it for 14 years
Someone PLEASE solve this crisis of affordability and gatekeeping to prevent diagnosis and evaluation. 14 years in autism support groups and I am so sick of hearing the same stories over and over about how difficult it is to get autism diagnosis evaluation and testing. Are there even national standards, or does each state do assessments again if you move to another state?
CDC in USA: Adults Autism USA: "4,357,667 (3.62%) male adults" "state estimates ranging from 3.17% of men in South Dakota to 4.01% of men in Massachusetts." "1,080,322 (0.86%) female adults" "0.72% of women in Arkansas to 0.97% of women in Virginia."
Stop the Madness of a Dysfunctional Health Care System seeking Profit instead of helping people!
Adults over age 24 (past university environment/school environment): I think it is important to distinguish those who can cope with a structured military-like environment, school where everyone is doing the same things at the same times, vs. unstructured "take care of your self, lift yourself up by your own bootstraps" of adulthood.
I want to KNOW about how the autism community is being treated:
How long the queue is for people being evaluated and diagnosed. What is the waiting list
How much it is costing to perform an evaluation and diagnosis. And a breakdown of cost. Is it labor hours for PhD staff that is in short supply? Is it building expenses? Is it computational time and records storage?
Can it be done via telehealth, doctors working from home? Can overhead costs be cut to perform these evaluations?
What is the historical cost and wait time for autism diagnosis i adults over the age 24? Was it this bad in 2003? 2013?
The crisis is that people can't even get evaluated and for 14 years it's all I keep hearing in support groups. How discouraging and difficult it is to find autism diagnosis. People are left confused and bewildered as to what is wrong with them when they can't eve get evaluated.
The main question here: Is evaluating patients for autism a very complicated labor-intensive process or is there something else going on that gatekeeping/turning people away is taking place? Precisely how many hours of labor and specialist medical professional attention does it require to diagnose an adult age 24 and older with autism? And what skills and knowledge are in short supply/bottleneck?
Heard of Diploma Mills? The medical community knows all about easily handed ut paperwork and credentials.
"A diploma mill (also known as a degree mill) is a company or organization that claims to be a higher education institution but provides illegitimate academic degrees and diplomas for a fee. The degrees can be fabricated (made-up), falsified (fake), or misrepresented (practically useless). These degrees may claim to give credit for relevant life experience, but should not be confused with legitimate prior learning assessment programs. They may also claim to evaluate work history or require submission of a thesis or dissertation for evaluation to give an appearance of authenticity. Diploma mills are frequently supported by accreditation mills, set up for the purpose of providing an appearance of authenticity. The term may also be used pejoratively to describe an accredited institution with low academic admission standards and a low job placement rate. An individual may or may not be aware that the degree they have obtained is not wholly legitimate. In either case, legal issues can arise if the qualification is used in resumes."
In the 14 years I've been involved and participant with autism support groups, it is the OPPOSITE of a "diploma mill" in the USA when it comes to getting official papers on autism for adults. People saying it costs thousands of dollars and a waiting list of years to get "official diagnosis". Time and time again where autistic people gather, the topic o diagnosis comes up. It consumes all the time and energy of actually how people cope with their autism and even becoming friends/spending time together other than the constant stream of people begging to have the diagnosis problem solved. They internalize these issues and it is clear to me to be a systemic dysfunction that people are not questioning exactly what the holdup is on getting people diagnosed. And the whole "pass/fail" attitude toward it. I was diagnosed 13 years ago with "Asperger's Syndrome", and it's obsolete - am I supposed to get re-certified? It's total nonsense how human beings are being treated and the lack of clarity and availability on the topic. This is primarily and information problem, the correct information is not iin the education system and the patients are all crying out while nobody is serving them. I'm so sick of hearing thousands of people in support groups all thinking it is only them and not the system itself!