Thursday, September 25, 2014

Entry 19: List For Desired Changes

Entry 19: List For Desired Changes 

Oct. 5. 2012

Here is my list, for desired changes. It is comprised based on my own personal experience with falling through the cracks in a variety of ways in the public system, and seeing others fall too, due long unrecognized Autism Spectrum and similar conditions.

Desired outcome: To gradually abolish the lack of awareness with regards to the varying presentations of Autism Spectrum, in varying public systems, by providing the most up to date information and improving education.

A) Diagnosis and treatment.

1) Providing up to date information to potentially referring GPs and Pediatricians, on the varying presentations of ASDs in all children with all types of personalities, encouraging them to move away from old information and old stereotyping; especially female children as the presentations are more subtle, different and at times conflict with the current DSM guidelines.

2) Providing up to date information for diagnosing clinicians on the varying presentations of ASDs in all children and adults with all types of personalities, and even amid comorbidity, again with paying special attention to the different presentations in females.

3) Improving wait times on diagnostic services for these children.

4) Encouraging clinicians to understand the differences between ADD/ADHD and Autism, and how they often overlap, with preference towards an ASD/Asperger’s’ diagnosis in which will result in more support/funding.

5) An improvement on the behavioral/cognitive services provided to those kids who, despite careful evaluation, still do not meet the criteria for ASD and would therefore receive an ADD/ADHD diagnosis in order to reduce the incidence of need to resort to medications such as Ritalin.

6) To increase awareness and education of how an ASD may present in an adult, again paying careful attention to subtleties in women, comorbid conditions, and encouraging education in order to intercept over-adherence to old information and old stereotyping; in order to reduce the incidence of that adult (who may be in desperate need for services) having to seek and and pay for a private diagnosis (that they most likely cannot afford) and/or be misdiagnosed/mislabeled with a mental health condition in which they either do not have, or is masking the autism factor, and therefore fall through the cracks on obtaining the rightful help, support, medical help and employability.
**Also once/if the adult is diagnosed, to look into ways of improving the accessibility and wait times of services that provide support towards healthy functionality and ultimately employability.

My own personal experience with accessibility and wait times was very difficult and required me as a young mother, already in a state of physical illness and urgent need, to do all of the leg work in accessing and relentlessly advocating for the service in which I am eligible for. Once I accessed the service the wait time for the service to be implemented was approximately seven months. Most of the friends I have, some even with diagnosed Asperger Syndrome, were not even aware of this same program in which they too could be eligible for and are struggling as a result. **

7) To increase awareness of the difference between mental health issues presenting because of either a true psychiatric challenge, or because of Autistic behavioral responses to reactive stress, or perhaps both (affecting each other.) This could also extend to include ADD/ADHD and Post Traumatic Stress Disorder.

8) Restricting the prescriptive authority of psychotropic medication, especially by the way of a GP, in people presenting with mental health challenges, until a more thorough evaluation is made as to what the true cause of the symptoms are. The results of carelessly prescribing medications without thorough evaluation do and have often resulted in catastrophic and sometimes tragic outcomes for many people, especially in young people.

B) Improved medical services for those with ASDs’ (this concept could extend to others with varying neurological and mental health challenges) including educating doctors on how to communicate with and treat people on the spectrum.

1)  Increase awareness/provide education about ASC for treating physicians in order for them to better understand the fact that those with ASC are more prone to health issues related to the digestive system, the nervous system and the metabolic system, as well as to autoimmune disorders. Increase awareness that those with ASD may have differences and/or troubles in communicating their symptoms, reactions to medications and treatment preferences. This is needed due to those with ASDs’ lack of ability to broaden their descriptions, anxious and other behavioral reactions (different to the typical) to unpleasant and/or concerning symptoms, and because of issues with Sensory Integration; which may cause the individual to either feel their symptoms too little or too much. This can cause the individual to fall through the cracks in addressing, diagnosing and treating a serious medical condition; or in retrospect have the individual though of us a melodramatic “hypochondriac” due to feeling a symptom as worse than it really is, and therefore being taken less seriously in future concerns.

*Doctors should be aware of sensory integration issues and the fact that autistics are more likely to react poorly, hyper sensitively, adversely, and to experience the side effects of pharmaceutical treatment. They should also have some general knowledge of right questions to ask an autistic individual.

2) To include more accessibility to alternative healthcare due to the fact that the A: the Alternative Healthcare Community already has a lot more awareness of ASDs’, B: that autistic individuals may be, and are often, on a very limited budget in which excludes the ability to afford Alternative Healthcare, and C: that autistic people tend to respond much more positively to Alternative healthcare treatments, and are as well more likely to need it. E.g.: special diet guidance, digestive system support/treatment, nervous system support, physio therapy, chiropractic, and specialized counseling for emotional support.

D) My thoughts on the proposed DSM changes:

Either keep Asperger’s’ in the DSM or have it be so that those who qualify for, or have, a diagnosis of Asperger’s’ would still qualify to be placed on the Autism Spectrum. I feel this is crucial because both kids and adults with Asperger’s’ are at a huge risk to fall through the cracks if they lose their placement on the Autism Spectrum, by not receiving the proper support and help.
The disabilities associated with Asperger’s’ are relatively invisible yet still serious enough to require secured supports. People with Asperger’s’ are especially misunderstood due to the invisible nature of it, and therefore often experience the pressure of having unrealistic expectations placed on them by an unaware society; this even results in the individual his/herself taking on their own high expectations of themselves and being very hard on themselves. Those with Asperger’s’ need not risk losing the support for their often hidden varying neurological challenges. They also very much need the emotional support of having to live with an invisible disability while having social/communication challenges.

E) Public Awareness

I like the idea of increasing public awareness and education, to try and abolish stereotyping and profiling, by way of using (hopefully?) sponsored media ads on television and poster boards. Although the Internet is great, even in ways other than the Internet as a lot of the older generations do not have or use the Internet.
Adds could say things such as:

“Autism doesn’t have to look a certain way”, “Autism can mean many different things for different people, everyone is different, challenges and strengths are different” “Some people with Autism struggle with communication but others can appear to be more articulate and expressive; and their existing difficulties are more hidden” “women and girls can also have autism” 

- Rose Whitson-Guedes

*Like what you read/wish to support? Diary of A Girl Outside The Box and others (Kindle) are available to purchase via the "books" link on my site!

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