Introduction to AUTISM SPECTRUM DISORDER, Problems and Issues

Over the few last decades, one of the most challenging and controversial issues in the field of care and treatment could definitely be allocated to a mysterious disorder called ” ATISUM”. Despite all extensive advances and achievements in the field of medical science and psychology, the main reasons and causes which lead to this lifelong disability are still unknown!

These obscurities have turned this annoying disorder into a notable and questionable matter in medical science. Although, most of the countries have made their best affords to address this issue and they have been looking for the best ways to diagnose as well as making proper approaches in order to facilitate the life of individuals living with autism spectrum disorder, their families and relatives, besides, they have been always trying to offer resources, information and facilities on a variety of options covering a wide spectrum allowing for individuals differences in treatment service options ,and providing conditions by which they can live peacefully with other members of society, there are still many problems in the way of their treatment which have remained unsolved all over the world.

This essay will first have a comprehensive look at what “autism” is, and it will address the most prominent issues such as:

Three main reasons of autism.
What autism is caused by.
Diagnostic method of it.
Different types of treatments, interventions and supports.
Probable deprivations and potential challenges which autistic people, families and relatives will be likely to encounter with, if there are no specific and well-thought-out plans designed for their condition.

Secondly, it will look into deficiencies which individuals with autism are suffering from, in spite of all efforts and supervision by the governments of Canada and the United States of America. Thirdly, it will investigate the solutions offered by “Autism Society Canada”(ASD to facilitate the lives of autistic people as well as their access to medical, recreational and educational facilities. And finally, after pointing out some noteworthy and considerable difficulties that autistic individuals, their families, relatives and care givers are engaged with, it will summarize the points and offers some suggested solutions related to Autism Spectrum Disorder.

Autism is a complex, lifelong neurodevelopmental disability that typically appears during early childhood and can impact a person’s social skills, communication, relationship and self-regulations. To talk about main symptoms of autism, five of the most important that must be considered are:

Delay in learning to speak
Avoidance of Eye contact or poor Eye contact
Behavioral Disturbances
flat or monotonous speech
Inappropriate social interactions

however, the severity of the symptoms varies widely among affected individuals!

To date, no known causes for autism spectrum disorder has been discovered, but it is generally accepted that it is caused by abnormalities in brain structure of the children with autism compared to in neurotypical children. Moreover, the largest study of its kind, involving more than 2 million people across five countries, finds that autism spectrum disorders (ASDs) are 80% reliant on inherited genes. that is environmental causes are responsible for just 20% of the risk. (Wednesday, July 17,2019 “Health Day News”)

Based on many comprehensive researches, catching autism early makes a huge difference. By recognizing the early signs and symptoms, parents can get their child the help they need to learn, grow, and thrive. Some children with autism have only mild impairments, while others have more obstacles to overcome. So, parents are invariably in the best position to spot the earliest warning signs of autism. So that, they can observe behaviors and quirks that a prediction, in a quick fifteen-minute visit might not have the chance to see, whereas they know their children better than anyone.

Although, the signs of autism are in a wide range, every child on the autism spectrum has problems, at least to some degree, in the following three areas:

Communicating verbally and non-verbally
Relating to others and the world around them
Thinking and behaving flexibly

Normally, ASD can be detected at 18 months or younger. By age 2, diagnosis by an experienced professional can be considered very reliable. However, many children do not receive a final diagnosis until much older. Surprisingly, some people are not diagnosed until they are adolescents or even adults!

With all these interpretations, the following delays warrant an immediate evaluation by a child’s pediatrician:

By 6 months: No big smiles or other warm, joyful expressions

By 9 months: No back -and-forth sharing of sounds, smiles, or other facial expressions

By 12 months: Lack of response to name. No babbling or ” baby talk”. No back -and-forth gestures, such as pointing, showing, reaching, or waving

By 16 months: No spoken words

By 24 months: No meaningful two-word phrases that don’t involve imitating or repeating

Regarding the problems and frustrations that children living with autism face in public and in relation to other members of the society, there has been a lot of research which demonstrate how they lack a so-called theory of mind, they do not understand that you are a different person with various needs than theirs. That is, other people are not able to” get” why an autistic child experiences a flickering light bulb as a bolt of lightning or a doorbell ringing as the sound of a thousand church bells. For more examples, individuals do not appreciate why a child might need to tap his/her food and run around the classroom to keep from falling out of his/her chair. To explore in more details, three main intense reactions related to children living with autism spectrum disorder could be taken into account:

Meltdowns
Temper tantrum
Aggressions

A meltdown is defined as an intense reaction to sensory overwhelm. When a child with autism is overwhelmed, she/he knows no other ways to express it other than with a meltdown. This might involve emotional verbal outbursts such as screaming and crying or physical reactions like kicking, biting or hitting.

A temper tantrum is usually a child’s method for getting what she/he wants. While a meltdown has no purpose and is beyond a child’s control. To be more specific, a temper tantrum happens when a child is: Frustrated with not getting what she/he wants. Not able to do what she/he wants as well as not being able to properly communicate.

Aggression in kids with ASD refers to violent behavior that may include kicking, hitting, throwing objects, punching and biting. Aggressive behavior can be directed to others or oneself. Both a meltdown and tantrum can involve aggression.

As all are informed, these unusual and abnormal reactions can easily lead autistic individuals, if proper and practical measures are not taken to treat them in early childhood.

There are many programs and supports available for people diagnosed with ASD. Interventions for ASD can include:

Occupational therapy, that helps teach daily life skills to individuals with ASD and since the development of fine motor skills is prominent to a person’s ability to perform daily living tasks, this includes using their hands and fingers. So occupational therapy can help them learn how to:

dress themselves
eat themselves
be aware of their body
improve balance and coordination
improve their academic skills, like writing

Speech and language therapy, people with ASD may need help with communication skills. Some are very vocal while others may not speak at all. Knowing many words does not mean that an autistic person can communicate in a way that is easily understood. A speech-language therapist can help people understand and use words to:

ask for help
ask and answer questions
look at books and tell stories
start, stop or take turns in a conversation

Training for parents, families and caregivers, by which they can receive training so that they can help support a person with ASD. Many of these skills are meant to help caregivers:

learn how to deal with self-injuring behaviors
learn how to communicate with someone living with ASD.
recognize and deal with situations that cause upset(triggers)
learn supportive routines and behaviors that bring comfort and promote success

Behavioral therapy, that specially applied behavior analysis (ABA) ,is often used to help autistic people . This can be done in a group or by oneself with a therapist. This therapy tries to help a person with ASD:

recognize emotions
communicate better
be prepared for school or work
learn ne, positive behaviors
learn daily life skills like self-care
identify what upset them
make plans to get through though social situations
stop negative behaviors, like hurting themselves

Limitations to this form of intervention (ABA) include the length of time required to see improvements, questionable generalize ability of learned skills, and lack of motivation at times from the patient to work on these skills. Additional limitations to ABA interventions include the cost of these intensive therapies, which can be substantial, given the intensive nature of treatment (usually 20+ hours a week)

Education and school planning, At school, a plan can be made to support and structure ASD’s learning. A committee identifies the needs of exceptional students. When they have identified these needs, they create a plan with help from the students and their parents or guardian. This is called an individual education plan (IEP).

To talk about existing issues and deprivations that individuals living with “ASD” experience in the field of care and treatment across the Canada, there are some serious obstacles and limitations mostly based on the written and credible statements of the “Autism Society Canada” that will be discussed in detail below.

Autism Society Canada (ASC) is a grassroots organization founded in 1976 by a group of parents committed to advocacy, public education, information and referral, and support for its regional society. Each provincial and territorial autism societies and their member groups provide direct support to people living with autism spectrum disorder and their families. Today, as a federation of autism societies, represented by each of the ten provinces and two territories, ASC embodies the largest collective voice in the Canadian autism community.

Source: Canada.ca

In Canada, ASC estimate autism affects hundreds of thousands of individuals, their families and nearby community. It also acknowledges that the responsibility for the delivery of direct health care services, in hospitals and in the community, and the legislation governing standards of care, rests with the provincial and territory. In addition, ASC has emphasized that appropriate quality of life for ASD’s and their families would reduce the cost of services to the provincial health and social service system.

Unfortunately, there are inequalities in services and supports across all age groups and across the country. Under the Canadian health act, the provincial and territorial governments are required to provide medically necessary hospitals and physician services to all eligible residents on a prepaid basis. However, access to best practice treatment for Autism Spectrum Disorders varies according to province or territory. From coast to coast, dealing with ASD’s is inconsistent. Whether it is under the umbrella of health and/or community services, every province or territory reinvents a solution to address the growing needs of its ASD community. Depending where you live in this country, the accessibility of a multidisciplinary approach varies, based on availability and cost.

Additionally, it has not been defined minimum standards of services and treatments and professionals across the country to ensure equal access to services across Canada. Besides, lack of autism awareness through a national awareness campaign targeted at individuals, health care professionals, and first responders are visible among the other problems.

Another considerable issue related to ASD’s which cannot be simply ignored, would be the “TIME”! To be more precise, many of services needed by people with ASD are publicly insured, however long waiting times for these services is a big challenge many families face. For instance, when the government of Doug Ford once announced its intentions to overhaul the Ontario autism program, something the Province’s Minister of children, community and social services has described as a “broken…. Liberal mess” that the Conservatives inherited. Some of children had waited nearly 3 years to enter! Although it had been well worth the wait as their parents acknowledge. Moreover, other autism therapy centers offer expensive services that only a few families can afford, however most families do not have access to alternative therapy resources.

Unfortunately, it is not uncommon for families to wait several years to receive a diagnosis of autism for their child from publicly funded health services in most provinces. And once a child is diagnosed, interventions with a strong evidence base, such as behavioral therapy, speech therapy and occupational therapy, have wait times of several months up to several years in most places across the country. Once services are received, families have access to these therapies for only limited time periods and often beyond the window of time that most experts believe optimal.

There is a theory published by Meghan Collie in Global news in December 28, 2019 that says: There were several hot-button issues that dominated the deadlines this year, but autism was easily one of the most contentious.

Since January, advocacy groups across the country have posted the lack of available services for children with autism. Misinformation continues to run rampant, with some Canadian parents still turning to dangerous “cures” for autism like bleach against the advice of medical professionals.

But it was not all bad. 2019 was also a year of advancement and discovery for autism researchers. And according to experts, this has helped to broader the society develop a more meaningful understanding about what it means to have autism.

“AUTISM AFTER 18”. this would be also a remarkable problem for individuals living with Autism Spectrum Disorder that should be taken into account. Why the system is failing Canadian adults on the spectrum? This has turned into a big question in the minds of ASD’s families. Actually, it would be roughly terrifying for most of the parents when they feel their child would never get into another care facility, given the long wait times and limited space, when she/he turn to 18. Though, it is a reality for dozens of families across Canada. Once a child turns 18, an adult in the eye of the government, they typically lose the access to a lot of government funding and services intended for children. Autism services are currently a provincial jurisdiction, but many adults end up in psychiatric wards when they do not get the care they need.

Transitioning to adulthood is a process requiring advanced planning and preparation. Some of the services and supports a child under 18 has, will come to an end and new adult services may begin. Parents may need to develop new expectations, activities, supports and services for a growing adult. The person with ASD will need support to identify their interests, strengths and their next steps.

Questions for the person with Autism after 18:

What do I want to do after high school?
What am I great at?
Where will I live?
Successful transitions require early planning and practice, practice, practice!

The access to the government funding and treatment services for ASD’s in several countries are almost the same but different in offering details and facilities in some circumstances. In the following, there is a brief overview of the facilities and conditions of autism treatment and its cost in countries such as United Kingdom, Germany and the United States of America that will be discussed.

According to the Washington Post, one in 45 Americans has autism, and over 6 million people in the country have autism and similar physical and motor ailments. Of course, in 2006, a bill called “War on Autism” was signed in the presidency, and since then, there have been various reports from the families of people with autism under the age of 18, which apparently improve the treatment of these patients. An article on the cost of the disease among American and British families was published on the JAMA website in 2014. The cost of a person with ASD and mental disability during their lifetime (including the cost of treatment, education and effectiveness) In the decline in parental productivity) in the United States is $ 2.4 million and 1.5 million ($ 2.2 million) in the United Kingdom. It also cost a person with ASD without mental disability $ 1.4 million in the United States and 0. 0.92 million ($ 1.4 million) in the United Kingdom. It should be noted that the cost of treatment for adults is much higher than for children. In a report citing the high cost of treating autism, CNN reported that the US nationwide insurance system for the low-income and the elderly costs 65 occupational therapy sessions for a patient, for example 2 sessions a week and about 100 per year. It also covers the treatment session needs but according to G plus responses from autism centers in the United States, private insurance is also active in the country, which, of course, does not cover the treatment of such diseases. But at the same time, global insurance covers more than half of the costs. Since 2014, everyone under the age of 21 with autism in the United States has been covered by Medicaid and has access to a wide range of services. This program is known as Early Periodic Screening Diagnosis Treatment (EPSDT). In fact, what is medically necessary in this country for the treatment of autism is the “Applied Behavior Analysis ABA” program, which the insurance must provide to patients free of charge. According to G plus, also in the United Kingdom, where people are reluctant to take out private health insurance and even private health care due to a well-equipped and strong healthcare system. The National Autism Society provides free facilities and services to patients.

In response to a question from a G plus reporter about the insurance conditions for patients with autism, he said: “In Germany, one percent of children born each year have autism disorders, which have different lengths of treatment, and of course the costs are the same as all.” Countries around the world are different, but the German government or the health insurance company covers all costs related to the diagnosis and treatment of these diseases, and the association also continues. In response to G plus: All occupational therapy services in the relevant medical centers are provided,

as well as children with autism in Germany can go to school with a companion and attend classes together. This companion can also be appointed by the governments.

With regards to the fundamental issues mentioned by Autism Society Canada and based on extensive research to write this article, there would be a few suggested solutions which has been provided by various organizations and professionals in recent years in order to breaking through the barriers of autism. For instance, ASC believes that:

A pan-Canadian initiative needs to be put in place to address ASD’s in Canada.
There is an urgent need to new method of treatments and medical care to be offered to people living with autism. Actually, no other medical conditions in Canada is being treated in such an out of date manner that affect families across the country.
A consultative body (maybe a Council) needs to be created to better inform Health Ministers whilst allowing consultative process with the autism community.

Canadians need a national comprehensive care across the current provincial health, education and social services systems to ensure that autism treatment and support are consistent across all environments and jurisdiction.
The federal government must work with the provinces to break down the silos and avoid wasteful duplication that exist across the country. It is understood that funds transferred from Ottawa to the provinces /territories for Health issues are not conditional, but they believe that Health Canada can provide statements that underscore and promote resource related to autism.
We need to develop a creative solution for specific issues that can be used as templates foe addressing autism in a national platform.
Governments could affectively establish minimum standards such as:

– Establish a national surveillance mechanism to effectively track individuals living with an ASD.

– Define minimum standards of service and treatments and professionals across the country to ensure equal access

to services across Canada.

– Promote autism awareness through a national awareness campaign targeted at individuals, health care

professionals and first responders.

Canadian governments have done little to address the crisis faced by autism families across the country. This sentiment was true in 2007 when it was put forward in the cross-party Senate report on the state of funding for the treatment of autism in Canada, aptly titled, Pay Now or Pay Later. And until recently, this sentiment could be used to sum up the role of the federal government which has largely left the crisis up to provincial ministries to manage.

But they are slowly coming on side. This week the federal government appointed a new “Autism Spectrum Disorder Working Group” with a two million dollar budget to develop a plan for a “Canadian Autism Partnership” that will address autism research, information sharing, early detection, diagnosis and treatment, among other issues.

It’s a good step forward but much more is needed, particularly on the health and educational services side of the issue so that real families get real help, now. According to the first comprehensive autism needs assessment survey of caretakers and professionals across the country, Canadian autism families are struggling to get the health services they need but can’t afford.

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These days, in this present hectic lifestyle, in which everything is moving towards renewal with an unexpected pace, what is more considerable in the field of autism treatment and health care services than other related deficiencies in Canada, would be offering outdated programs, supports and interventions which are invariably not sufficient to bring the needs of people diagnosed with ASD as well as their families . Therefore, an urgent need to develop new alternative methods to address this issue across the country is deeply tangible.

WE ARE IMUTISM!

In order to break through the barriers of autism, as an alternative program of regular occupational and speech therapy, our digital imitation-based videos and tasks, designed for different age groups and levels of autism, are available through a platform to teach life skills to ASD children and adults.”IMUTISM” also provide families with a place to communicate with other families and exchange experiences.

In conclusion, based on the personal belief I hold as someone who has chosen Canada with all her faith, motivation and interest, to call it her hometown from now on, and has done all her best to know this country in a proper way, despite all deprivations and issues that individuals with autism are engaged with, having access to the low- cost treatments and getting free from the burden of being waited in time -consuming medical care lists would not be an unfulfilled dream. Because, Canada is one of the top citizen-oriented countries all over the world, where people’s concern is the most prominent concern of its legislators. So, it would be an obvious truth that in the near future, with a constructive cooperation and coordination of all provinces and territories as well as the supervisory role of government to offer the most appropriate medical services, not only there would be no other barriers and concern in getting treatment services for children with ASD and their families, but a proper and suitable medical and treatment plan would be undoubtedly implemented for adults with ASD who are suffering from lack of related facilities. However, the constructive role of ordinary people and grassroots organizations in removing these problems and difficulties should not be overlooked.

E.Souizi
IMUTISM Chief Marketing Officer

October 2020

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References:

Autism Society Canada

Canadian Paediatrec Society

Autism Speaks Canada

EvidenceNetwork.ca

www.our commons.ca (House of Commons of Canada)

Los Angeles Times

Stanford Children’s Health

Autism Resource Center