I live in Oakville, and am presently employed at Sheridan College, working on the telephone switchboard. I lived a challenging life, dealing with many hardships with many different situations, being different for unknown reasons and unable to mesh smoothly into society. Ultimately, they were all learning experiences.
Diagnosis:
My condition was finally discovered when I was in my twenties. One day; my brother was watching Shirley, a TV talk show, and the subject was on autism. He noticed that many of the characteristics matched my own, so he sent for a transcript and obtained a phone number to one of the doctors on the show. My mother contacted the doctor, who referred me to a psychiatrist in Hamilton. When I met with this doctor, he confirmed that my characteristics matched those of Asperger Syndrome. Upon knowing this, a heavy weight was lifted from my shoulders. It was great to actually know and understand what has been going on with me, and I was no longer blaming myself for my challenges. This became the turning point in my life.
Characteristics:
Visible characteristics of autism include:
Obstacles that people with autism face may include:
In a neurotypical individual, the brain has an amazingly high capacity for intelligence, and it is extremely thirsty for knowledge. Like a sponge absorbing water, the brain rapidly absorbs and processes any information that it perceives. The individual goes through life constantly absorbing all of the information that he/she is exposed to, steadily gaining experience and wisdom. In a developmentally-challenged individual, the brain works in a similar manner, but at a simpler scale. This brain has a limited capacity for knowledge, depending on the level of challenge. Information is also processed at a slower rate. The individual gains some knowledge and wisdom, but not as much as a neurotypical individual. In an individual on the autism spectrum, the brain is actually identical to that of a neurotypical individual. However; this condition forms a maze-like pattern of communication between the brain and the senses, causing the brain to absorb only selected pieces of information. With the limited information that it does gather, this powerful brain will process it and clarify it to amazingly precise detail.
Since the brain is only able to pick up certain bits and pieces of information at once, the outside world can be a blur for a young child on the spectrum. Inside the familiar home surroundings, the child is able to learn the basics, such as recognition of the home and family. Since information gathered is usually limited to the home, the child has a very little variety of what he/she becomes familiar with. Therefore; the child becomes fascinated by simple household items that happen to catch the eye. Such objects may be those that rotate, oscillate, or illuminate. These items may include fans, lights, records/tapes/CD’s, motors, and appliances. Once the child becomes familiar with and fascinated by these items, he/she will notice and watch for such items outside of the home. Throughout the childhood years, the individual tends to develop an obsessive interest in these objects.
People on the spectrum are known to have incredible memories. This may be true because of the small amount of information that this powerful brain has to work with. In a neurotypical person, there is a large amount of information that the brain has to process. However, the brain in a person on the spectrum has a much easier job. Since there is far less information to work with, the brain can process the information that it has to much greater detail.
People on the spectrum become highly dependent on routine, and anything new or different may appear strange and frightening to them. Without adequate preparation, transitions are hard to accept and adjust to. Familiarity is the comfort zone, and the person tends to be reluctant to go beyond the boundaries.
Teaching Strategies:
School can be a difficult situation for the child if appropriate assistance is not provided. Since the child is sensitive, he/she may be uncomfortable with the strange surroundings, and become intimidated by teachers. Peer pressure can become a difficult situation if not properly dealt with. Children easily notice qualities that are different about certain people, and tend to ridicule these people about their qualities. Since a child on the spectrum has qualities that are eccentric, mocking and teasing may be a serious problem for this individual. Students on the spectrum may also have difficulties in grasping the school curriculum, and end up struggling in their studies. These problems can be compounded if teachers do not provide adequate assistance.
School was a major problem for me during my growing years. I faced severe difficulties with my studies, and ultimately had an extreme dislike towards school. I was intimidated by the workloads, the peer pressure, and the treatment from the teachers. I felt that I was imprisoned, and preferred to be at home fantasizing and watching TV. I was unable to pay attention in class, and often couldn’t bring myself up to doing homework. The teachers added to the problem, chasing me on a regular basis. They would yell at me, strike me, and deliberately humiliate me before my peers. I certainly hope that our school system has evolved since those medieval times. As a result of my challenges, my grades suffered. I failed Grade 4 and several high school courses, and usually averaged slightly above passing. Report card day was seldom a good one for me.
I have had some decent teachers throughout my school years. In elementary school, I have had some teachers that have encouraged me with praise. Whenever I did well in something, and the teacher expressed pleasure, I felt rewarded. I continuously worked hard in order to achieve this goal of reward.
My past experience has inspired me to come out with suggestions to better educate students on the spectrum. To improve performance in school, intensified tutoring would help tremendously. The individual may need a full-time personal tutor who can constantly monitor the student’s performance. This tutor must always be available for assistance, and able to help the student out of any academic jam. If the teacher is not always available for extra help, at least the tutor will be. As well; the tutor can be someone that the individual can come to for help with any kind of problem in school, including peer pressure and conflicts with any teachers. Ultimately, this tutor must be somebody that the student is totally comfortable with.
Peer pressure is another major problem that must be alleviated. Each teacher should educate the class about the individual and one’s condition, and discourage the peers from teasing. Whenever there is an ongoing problem with teasing (e.g. a certain group of people constantly harassing the individual), teachers should be informed and willing to take action to rectify the problem. Such a situation can be dealt with by meeting with the group of troublesome peers, and having a serious discussion about the situation. The peers must be convinced to stop the teasing, and be monitored on a regular basis as to prevent further problems.
One idea that may help in solving the problem of peer pressure in high school would be a peer alliance system. This system would consist of a group made up of decent peers (who do not like to participate in teasing people), and victims of peer pressure. This group would act as a social circle at school, which peer pressure targeted teens can hang out with during spare times. These people would play the role as friends, providing support for socially-deprived teens. They can monitor how their friends are being treated by their peers, and stick up for them in a civilized manner whenever there is a problem. As well; the group can arrange social events outside of school time, giving socially-deprived teens a chance to have pleasureful times with decent people. People with many friends experience less teasing. As the saying goes, “United we stand, divided we fall!”
I don’t believe in total classroom segregation, but I do believe that children on the spectrum need extra individual attention. Children on the spectrum should have at least some exposure to society and it’s people. They need an idea of how to mesh into the social world. However, they also need extra help and more individual attention in order to handle the class curriculum. Ultimately, I believe that it may depend on the individual and the level of challenge.
Social Skills:
A person on the spectrum does not mature gaining social wisdom in the same manner as neurotypical people. They may not be able to read certain things, such as nonverbal cues, properly. They have a tendency to comprehend communication literally, and not understand common sayings. This person may be offended by a comment not intended to be derogatory, and become unnecessarily defensive. The person may not always be able to take a joke, since he/she may have difficulty distinguishing humour from fact. They also tend to overreact over superficial issues, due to difficulty in proper judgement. The person can be extremely intimidated and terrified by a challenging situation (e.g. being questioned by a police officer, being reprimanded by a supervisor at work, learning a new job, being involved in a personal confrontation). People on the spectrum may have difficulty distinguishing when to trust, and that can be a scary situation if this person is dealing with a “con artist” who is a professional at fooling people (e.g. sales people, thieves). A person on the spectrum, like anybody else, must understand that we live in a world where we must keep our eyes open.
Social skills are a very important factor in integrating people on the spectrum into society. Our Autism Societies provide extra-curricular activities for children, giving them experience in multiple social interactions and participating in activities. I am a member of Autism Society Ontario, and participate as a counselor in various activities and games. The rules are simple - everybody wins and has fun. I have found it very beneficial for the children. As I’ve mentioned with teaching strategies, extreme segregation in school can deprive children of social experience.
There are presently support groups for adults on the spectrum, although they are general. As well, there are few support groups for teenagers. With the present small body of diagnosed adults, we have very basic support groups that are mainstream. If more people on the spectrum come to surface, it can be possible to create support groups of several categories based on level of challenge. This way; we would have several different groups of people who are similar to one another, and everybody would be receiving appropriate support. This kind of system can be made up of regular meetings, as well as frequent special events. Group meetings would enable adults and teenagers to make friends who have much in common, find companions to date, and enhance social skills. In addition; frequent special events, including recreational activities, can make life more pleasureful and fulfilling.
Singles gatherings may also be beneficial for single adults on the spectrum. This set-up may consist of regular meetings, and also provide special events, such as dinner, shows, games, and dances. This is ideal for making friends, finding dates, or simply having fun! Finding a partner for a romantic relationship is another area where adults on the spectrum experience difficulties, so this would definitely help in that area. These gatherings would be arranged in several categories, based on age and level of challenge.
Counselling:
Counselling is a major key in assisting people on the spectrum. The aim is to teach them to think and practice with special additional guidelines; including scripting, simplifying, dramatizing, prioritizing, and setting rituals. There are not many techniques presently etched in stone, but we are developing and experimenting with many new ideas.
When I was six, my parents sent me to see a child psychiatrist. The autism spectrum was not well known in the seventies, and this doctor came to the conclusion that I was highly intelligent, but lacking in motivation. I was diagnosed as sanguine. He recommended introduction to responsibilities (e.g. tidying my bedroom, setting/clearing the dinner table, etc.) and strict discipline. He designed a demerit-oriented system to motivate me to keep on top of my responsibilities and maintain good behaviour. I would acquire demerit points for misbehaving and neglecting responsibilities. If I exceeded a couple demerits in a week, I would be penalized by forfeiting certain privileges. However; there was a reward for good consistency -- I would not be punished. I was seeing this doctor for many years, and as time went on, he became impatient with me. I was not progressing in maturity, still living in a fantasy world, and struggling in my studies. If things were not to improve immediately, he advised my parents to send me to military school. As a result, I was living my childhood in fear and intimidation.
In proper counselling, the goal is to use effective strategies to deal with the many situations associated with autism. To help with the confusion and intimidation of responsibility, the aim is to simplify the challenges. Scripting is becoming a popular practice in guiding children on the spectrum. The process is simple; a portfolio is arranged in order to direct the child through daily responsibilities (e.g. dressing, toilet use, daily planning, table manners). This portfolio consists of pictures accompanied by simple sentences that the child can easily understand and follow. Another technique in making life easier is dramatizing, which can be an aid in helping a child become motivated. As an example a child can be encouraged to participate in household chores by making a game of it. This may even turn work into fun for the child, making cooperation easy. When I was a child, I used to incorporate fantasizing with my tasks when performing my household chores, and it actually helped me in self-motivation.
Simple organizational skills may be very helpful in planning and simplifying the lifestyle of a young person on the spectrum. The aim is to teach the individual to plan each day and prioritize daily activities. A typical day would be scheduled and prioritized as follows: (1) taking care of all morning rituals; (2) attending school and/or work; (3) taking care of other responsibilities - including homework, household chores, and personal responsibilities; (4) leisure time, which can be spent however the person wishes. Priorities may be set as rituals, which may become good habits after a certain period of time. It is possible that if practised consistently, this schedule can become normal everyday life that the person may not want to deviate from. Every person is different, so it may depend on the individual as to whether the new system should be introduced suddenly or gradually. These mentioned ideas are not intended to be hard-and-fast rules, but suggestions which would not be harmful to experiment with.
Patience is an extremely important factor for caregivers and family members in dealing with a close one who is on the spectrum. Living with a person on the spectrum may become quite challenging at times, and people around the individual may sometimes feel that they have their back up against the wall. However, it is very important to hold on and not lose it. It is proven that aggression only worsens the situation, like extinguishing a fire with fuel. Being aggressive will scare the person, anger and cause the person to retaliate, and lower his/her self esteem and confidence. If a caregiver and family member is normally aggressive and negative towards a person on the spectrum (or any person), long-term consequences will result. Such behaviour towards the individual can cause him/her to develop a resentment towards the aggressor, and slow the maturing process for the individual. You, as a caregiver, must put yourself in your child’s position. Analyse how you deal with your child, and imagine how it would feel if your parent dealt with you the same way. Consider how you would wish to be treated, and what you feel would be effective, in order to have an idea of how to deal with your child properly. Most importantly; never prioritize yourself, your position, or your pride ahead of your child’s situation. Patience, empathy, and integrity must always be considered top priority in family relationships, and must never be neglected.
Different methods of counselling could be of great assistance, depending on the individual and/or the situation. Individual counselling, which is strictly one on one with counsellor and patient, would be quite helpful. This would be personal; and therefore, private and confidential. The counsellor can provide assistance in social skills, assertive skills, and organizational skills. Another means would be family counselling. Immediate family members need to be thoroughly educated on autism, and how to deal with the individual properly. Any problems that occur within the family can be discussed and worked out in these sessions. If the family has little or no knowledge of autism (especially in the case of it being undiagnosed), it can be a very gloomy and messy situation for them.
Vocational Assistance:
Employment can be a struggle for people on the spectrum. Entering the work force without preparation can be a traumatic experience, and employment can continue to be problematic in years ahead. The individual may become uncomfortable with the unfamiliar surroundings, and he/she may lack the confidence and motivation required to take on the tasks. Directions often must be precisely given to those on the spectrum, in a way that they understand. In the world of employment, that’s not often the case. Employers, in general, are demanding. Since they are paying employees to work, they expect them to understand and perform the job properly. Employers are intolerant over substandard performance, and will not hesitate to express disapproval in a harsh manner. This may be a critical situation if an employee is on the spectrum. Since the person is sensitive, he/she may become terrified of supervisors. A youth on the spectrum ultimately becomes apprehensive in being employed.
Employment was a complicated issue for me as a teenager. I landed my first job one summer when I was 17, in a distribution warehouse. It was a difficult situation for me to adjust to, since I never worked before. I often came in late, like I did in school, but got severely reprimanded for it. I also was unable to comprehend instructions, and they often became very impatient with me. And I was constantly pressured to keep up the pace, which often fluctuated. After I graduated from high school, my parents had a difficult time getting and keeping me employed. I was extremely reluctant to have a job, since it was far beyond my state of comfort. I did not want to go to a strange place everyday to take on undesired tasks. As well; being a sensitive person, I was always terrified of supervisors. I preferred to be at home, where I was comfortable. It was always so hard for me to make the transition from a free lifestyle to a regimented schedule. When my parents made me go out to look for work, I would bike around town stopping at very few places and partially filling out applications. They also looked through the papers finding employers for me to contact, which I did against my own will. During that time, I have been through temporary successes and failures in employment.
A vocational integration plan can be helpful solution, designed to gradually integrate youths on the spectrum into the work force. This plan can begin with theoretic preparation, similar to a classroom setting. The counsellor would discuss in depth about employment; describing what it is like, what is expected from employees, and different types of work. The next step would be practical preparation, in which the students can perform practice tasks, perhaps in a mock workplace. This would give them the feel of working.
Once the preparation sessions are completed, the student may be assigned to temporary placement. The vocational integration committee can meet with employers who are willing to participate, and educate them on autism. The individual may be gradually integrated from part-time to full-time employment, at one’s own rate depending on the individual. The purpose of this is to gradually prepare the individual for employment. The program can assist in post-secondary education and career planning. This program would be able to match the young individual with a steady job for the time being. This can also lead to permanent employment if the individual desires, depending on one’s career goal.
Many adults on the spectrum would benefit greatly with assistance in career planning. Their condition should not deprive them of a career that is enjoyable and rewarding, nor restrict them to a mundane job. Upon completion of secondary education, a career-planning program would be very helpful for those individuals. This type of program would also come in handy for those who are on Employment Insurance, or Workplace Safety and Insurance Board.
With this plan, the individual may be given approximately a year in this program to allow him/her to research various types of careers. The individual may begin by providing a detailed portfolio of one’s self, history, education, and past employment. Then along with theoretical preparation, lessons can be provided for job-searching skills; such as cover letters, resumes, phone inquiries, and interviews. The program can also provide practice tasks relating to certain careers considered, giving the individual an idea of what it is like. After that, the individual can take the time to decide what kind of occupation he/she would prefer. This program would be intensified, in order to find a suitable and enjoyable career for the individual.
Once the decision has been made, the program can provide assistance in proceeding in post-secondary education, if necessary. The counsellors in this program can assist in researching the educational requirements for the career, and finding a suitable institution (i.e. college, university, etc.). Upon graduation from school, the plan can provide assistance in placement. Job-searching skills can be reinforced, and any additional help required can be provided.
Anxiety:
Hypersensitivity is common among the autism spectrum. Strong emotions, such as anger and fear, can be traumatic for a person on the spectrum. Temper tantrums are a result of anger beyond the control of patience, and can be triggered by any form of inconvenience. The individual can be easily annoyed by certain sounds or minor incidents. Common fear can be magnified to the point of making the individual become paranoid. Extreme senses (e.g. noise, light, texture, smell, taste) can make the individual extremely uncomfortable. Depression is a common problem with autism, and can often strike for no apparent reason. There is no complete answer to why this is so. It may be related directly to autism, or based on factors resulting from it.
The typical solution that a person on the spectrum uses in dealing with problems is simply to withdraw. If the individual is struggling in school, he/she will neglect to put any effort into studying. If the person is uncomfortable in a certain job, he/she may quit or deliberately perform poorly in order to be fired. If the person becomes stressed or bored, he/she may resort to daydreaming as an escape from reality. Addiction to drugs and alcohol is a common escape method for many people; therefore, people on the spectrum may be especially prone to substance abuse if exposed to it. This is a situation that must not be overlooked, especially when the individual is young.
A major problem with me as a child was my temper tantrums. I easily became upset when things did not work out the way I anticipated. I was irritated by situations that included my rituals being broken, being disciplined, being ridiculed and disapproved of, being left out, and a time or activity of pleasure being ended. Such situations caused me to throw temper tantrums, and I usually ended up being disciplined by my parents or teachers. I threw those fits simply to express my feelings and displeasure, hoping that people would cooperate with me, but it never worked.
A major problem that I had to deal with as I was maturing was my lack of self-esteem. In dealing with most young adults my age, it appeared to me that I was far behind in knowledge and life experience. In the years before my diagnosis, I could not figure out what was wrong with me, and I was blaming myself. I struggled to catch up, but I did not know how. It was that, along with the negativity that I have received throughout my life, that has left me down on myself. There were times when I have felt so low that I have become physically sick.
I still presently experience some difficulties due to my challenges. I am an exceptionally sensitive person. I become easily hurt when involved in a personal confrontation. I also tend to become paranoid and think the worst if times seem a bit challenging. My temper is a major problem for me. I still easily lose it whenever I am inconvenienced in any way. My self esteem also hits it’s lows at times.
I am very hypersensitive to sound, often becoming startled and annoyed by sudden or loud noise. Unfortunately; I cannot escape it, but I do take certain steps to lessen certain noisy situations for me. For example; whenever I shut my car off, I always make a point of turning off the radio so that it does not blast me whenever I start my car again. We have a chiming clock, which at countless times, I have thrown corks at. I can turn the chimes off; but then, I may as well turn off the fridge, the furnace, the dishwasher, my family members’ voices, and everything else in the house that makes any noise. It would be an awkward path to take, but at least, the place would be nice and quiet.
I have difficulty accepting transitions. When my mind is set on something, I prefer if things turn out exactly as I anticipate. I do not like surprises at all, even if it is not for the worst. I have an electronic planner which I live off, and I schedule my life around it. I plan my days far in advance, so if anybody needs me, they have to make an appointment. It becomes very difficult for me whenever something suddenly comes up, and I find it hard for me to readjust. I prefer to be notified in advance about any change of plans whenever possible.
Commenting on my own experience, I do not think it is possible for an individual on the spectrum to control one’s own temper without any outside help. I admit that I am still unable to control my own temper, no matter how hard I try. I have read and heard many tips in controlling one’s own temper, but I think that it is easier said than done. In addition; we are all human, and nobody can always be patient. Parents and immediate family members can assist mainly with patience. Temper tantrums should always be dealt with in a non-aggressive manner. It is now obvious that treating a tantrum with aggression is like extinguishing a fire with fuel. The individual can be cooled down much more quickly if spoken to in a calm and patient manner. If not, a good aversive would be a time-out period. Once the anger diminishes, the parents should come and sit down to discuss the situation in a peaceful nature. No unfinished business should ever be left. Also; I believe that the individual should be allowed to have whatever he or she desires, as long as it is within reason and fairness. For example; if the individual wants to be alone, he or she should be allowed solitude. No one should intentionally go against the individual’s wishes if it’s not necessary. Nobody can always get what they want, but problems can be reduced if life is a little easier. Generally; situations that cause anger should be observed closely, and steps should be taken to improve on them for the future. Like parents, teachers must deal patiently with temper tantrums. They should investigate the problem thoroughly, and then rectify it completely.
Services for Adults and Teenagers:
Presently, autism is a condition still in the growing stages of research and treatment. We still have work ahead of us. When adults on the autism spectrum (like me) were young, autism was almost unknown; and therefore, not treated. Today, children on the spectrum are being diagnosed and treated. They have the advantage of receiving proper treatment and all the assistance they need as they mature. They have a very optimistic future.
But, what about the older people? Presently, most services are geared towards children. There are many adults and teenagers who have been recently diagnosed. They went through life the hard way, and are still experiencing challenges. They need assistance to make up for the lack of proper help in their growing years. Services for teenagers and adults on the spectrum are desperately needed!
Ultimately; our mission is to come out with ideas to provide support for teenagers and adults on the spectrum, to account for what they have missed in their growing years. In order to accomplish this, we need to round up all of older people on the spectrum. Along with the many people out there who have been diagnosed with this condition, there are many more that are undiagnosed. If the condition is suspected, it must be diagnosed! We need a large body of these individuals before action can be taken. Also, we must educate the public. Society has to be designed to better accommodate these individuals. These people are presently experiencing complications that they do not deserve to go through, and they are definitely entitled to a better life.
A move that would make this all possible is advertising. We must put out a word to encourage people who suspect being on the spectrum, or family members of such, to receive a proper diagnosis. This way; we can round up all the people on the spectrum and achieve a large human body, and action will be taken. We must also make the public well aware of this condition. One means is by creating and distributing pamphlets to medical centres and schools. Advertising can also be done via radio and TV. If advertising can be made possible ASAP, we can get the ball rolling quickly.
A major problem that presently persists is that there are few doctors and counsellors that specialize in autism. Obviously, we must expand medical/psychological education and provide more encouragement to create more doctors in this field. Again, this could only be made possible with a large body of people on the spectrum. Today, it appears as if there are not enough people with this condition for professionals to concentrate in this area -- but the situation is not actually as it appears! There are many of those who need the assistance, and we require more professionals to accommodate them.
Safety Skills:
Learning safety skills and street wisdom is important for children. It is an especially concerning issue for children on the spectrum. These children tend to detach themselves and become unaware of what is going on around them. This may be a dangerous situation when they are out on busy streets. They can also be easily lead, which is a scary situation considering there are many crazy people out there. When I was a child, I made a mistake that almost cost me my life.
One summer day, when I was nine, I was riding my bicycle on a street close to where I live. My parents were driving down that street, and when they saw me, they stopped to talk to me. They were on their way to visit someone, and they told me to go straight home. Because of my condition, I was not always thinking on my feet, and neglectant on road safety habits. I started off towards home, not looking as I rode my bike across the street. There were two oncoming cars, one going in each direction as I crossed directly in front of them. One frantically honked at me and the other had to slam on the brakes, missing me by barely a foot! When I arrived home, my parents were back there waiting for me, and I was disciplined severely! It was since that time that I began thinking about safety habits.
I feel that milder aversive tactics would have been equally helpful. Severe discipline is not necessary, nor helpful, in steering a child on the spectrum in the right direction. You may have to teach them over and over again about safety, and even stay right beside them on a regular basis, but I feel that they will eventually learn.
I honestly do not know what it is like to be like the majority of the human population who are neurotypical. In turn, all of the neurotypical people truthfully do not know what it is like to be on the spectrum. The feeling may be quite similar, and yet, it may be altogether different. However; I do not look at autism as a disability, but simply a way of being. I also believe that people on the spectrum can be assisted to function more easily in this “norm-oriented” society. They may have to think and practice differently, but I do not think it is impossible to bridge the gap. The techniques may not be totally figured out as yet, but if we have come this far, imagine what we will be able to achieve down the road! The future looks hopeful, and I honestly believe that there is a light at the end of the tunnel.