1. 10 First Person Perspective
1.1. Bullying and Victimization in Youth with ASD


What is the research about?

Youth with Autism Spectrum Disorders (ASD) experience higher rates of bullying than youth who do not have disabilities. However, very little research has been done to investigate bullying experiences in youth diagnosed with ASD. Rather, research has focused on rates of bullying victimization in youth with ASD compared to typically developing youth. The current study examined various forms of bullying in children, youth, and young adults with ASD. The study also investigated the relationship between victimization and mental health problems, and the individual factors (e.g., child age, communication problems) and contextual factors (e.g., parent mental health) that increased the likelihood of being bullied. 

What did the researchers do?

The researchers asked 192 parents whose children (ages 5 - 21 years) had a diagnosis of ASD to complete an online survey about bullying experiences and mental health issues. All the youth were enrolled in school (grades 1-12), and nearly all were Canadian.

What did the researchers find?

The majority of parents (77%) reported that their child with ASD had been bullied at school within the last month. Many youth were experiencing chronic bullying; 43% of the youth experienced bullying at least once per week, and 50% had been experiencing victimization for more than a year. Chronic victimization was related to mental health problems including depression, anxiety, hyperactivity, and self-harm. Victimization was more likely to occur in younger children, as well youth with fewer friends at school, greater communication problems, and parents with mental health problems.

How can you use this research?

This study showed that rates of bullying are higher among youth with ASD than the general population. It is important to pay attention to the mental health in youth with ASD who are experiencing bullying and provide them with interventions to address mental health problems. It is important to help reduce the risk of bullying by helping youth to communicate about bullying experiences effectively, and by facilitating the development and maintenance of positive peer relationship and friendships. We need to support parents to work with schools where the bullying is happening, and to support school staff in creating safe environments for everyone. School-wide bullying prevention programs and interventions can be used to reduce bullying, and to build healthy relationships at schools.

What you need to know? (take home message)

Bullying is a very common experience for youth with ASD and occurs more often than in youth without ASD. A child's age (being younger), communication problems, lack of friendships at school, and mental health problems among parents all increase the likelihood that a child with ASD will experience bulling. Youth with ASD who experience chronic bullying are much more likely to have mental health problems than other youth with ASD, and it is important to address victimization with adult support in the home, school, and community, as well as school-based bullying prevention and intervention programs.

About the researchers

M. Catherine Cappadocia is a doctoral student in clinical-developmental psychology at York University, working with Dr. Debra Pepler. She is also a research assistant for PREVNet (Promoting Relationships and Eliminating Violence Network), a national network of Canadian researchers and non-governmental organizations committed to bullying prevention and intervention. Catherine has studied bullying for almost ten years, examining its relationships with other phenomena such as attachment to parents and peers, gang involvement and body image.

Jonathan A. Weiss is a Clinical Psychologist, and Assistant Professor at in the Psychology department at York University. As the Chair in Autism Spectrum Disorders Treatment and Care Research, Dr. Weiss' research focuses on the prevention and treatment of mental health problems in people with autism spectrum disorders (ASD) and/or intellectual disabilities (ID) across the lifespan. Dr. Weiss is also interested in why people with ASD are prone to developing mental health problems, and evaluating novel treatment strategies to help youth and adults with ASD deal with these issues, as well as other stressful events like bullying.

Debra Pepler is a Registered Psychologist, and a Distinguished Research Professor in the Psychology department at York University. Dr. Pepler was awarded a Network of Centres of Excellence: New Initiatives grant to establish PREVNet - Promoting Relationships and Eliminating Violence Network and continues to be interested in community-based research and public policy development on pressing social issues related to children and youth. Dr. Pepler's research interests also include understanding and addressing children's aggression, bullying, and victimization. 

Cappadocia, M. C., Weiss, J. A., & Pepler, D. (2012). Bullying experiences among children and youth with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(2), 266-77.

This summary was written by Stephanie Fung for the Chair in Autism Spectrum Disorders Treatment and Care Research. This summary, along with other summaries, can be found at http://asdmentalhealth.ca/research-summaries/


 

 
 
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Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
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1.2. Common Money Management Challenges and Solutions

By Todd Simkover & Evguenia Ignatova

 
The information stated in this article comes from the authors' personal experiences, their observations of other people on the autism spectrum, as well as Evguenia's consultation with an autism specialist.

Budgeting and money management can be difficult for anyone, not just for individuals on the autism spectrum. A lot of the time, people on the spectrum have trouble managing their own money due to a lack of guidance and practical experience when it comes to saving up and spending. With other issues to deal with, parents can sometimes overlook the need for teaching this crucial skill. The following are some common difficulties people on the spectrum encounter when it comes to managing money:

 

  • Understanding the monetary value of items: In order to understand how to spend wisely, an individual has to learn how much it is practical to spend on a certain item. In order to be able to grasp this concept, one needs to figure out the most important features of the item being purchased and whether one feature outweighs another. For example, when Todd moved into his first apartment, he bought an air conditioner for around $600.00 and didn’t even think of a used one. Since he was unfamiliar with reasonable prices for air conditioners and didn’t have the patience to shop around for the best deal, he made the mistake of trusting the salesperson’s advice as he was told that this was the one he needed for the size of his apartment. However, the air conditioner installer later informed him that he was ripped off, as he only needed an air conditioner half as powerful which would have cost half the price. Even more surprisingly, he was also informed by the installer that this was the largest air conditioner that he ever had to install! Nevertheless, he did not go through the trouble of returning the appliance as he thought it would have been too overwhelming as he had a lot on his plate at the time. Despite regretting having spent more than he needed, Todd acknowledges that one advantage of having an excessively large air conditioner was that he was never hot in his apartment! This example demonstrates that whenever you set out to buy something, you have to make sure that you are aware of what exactly it is that you are looking for.
  • Poor planning: When making purchases, it is necessary to have an idea of what options are available ahead of time. This is often easier to do with things that you may buy often, such as snacks or drinks, since you gain a lot of experience buying these things. However, with larger purchases such as furniture, cars, homes, household appliances, or even clothing/shoes, you need to make sure that you know what is available and what you want to buy in advance. The less experience people have with purchasing certain things, the more prone they are to potentially wasting a lot of money, as Todd's example demonstrates: "I have mismanaged my money with the last two cars I've had. I leased my first car (which is basically renting, but then you could choose to keep the car if you pay off the remaining amount). When you lease a car, you have to pay for the kilometres travelled ahead of time. Because I did not read the fine print, I was under the impression that if I did not use the full amount, I would get reimbursed. Also, I was working full-time at the time, and didn’t anticipate that I would later go back to school and drive less due to working fewer shifts. As a result of this miscalculation, I spent an extra $1300.00 on prepaid kilometres that were never used—I returned the car with 13000 kilometres less than I signed up for and was surprised to discover that I could not get the money back. For my second car, I wanted to get an old car so that I could save money on insurance, but then I ended up spending more money on car repairs than I would have saved on car insurance." Therefore, before making any large purchase, it is necessary to brainstorm all of the future possible consequences before making the purchase. In order to do this properly, in-depth research is necessary.
  • Susceptibility to peer pressure and gullibility: We know many people with ASD who are desperate to fit in socially and are very eager to please. Non-autistic people often spend large amounts of money on eating out or drinking and may consider someone who is trying to save money as "cheap". This can pressure a person to spend more than he or she can afford. Another attempt to fit in socially or to try to be useful in society may be to lend or to give away money to people. Without full knowledge of people's intentions and without full awareness of one's spending limitations, lending or giving away money can lead to future money shortages. And as Todd's first example demonstrates, it is also important to understand that salespeople are generally not trustworthy as they are usually trying to make the most money out of their sales. Even when buying clothes, I have often mistakenly fallen for the salesperson's opinions, but then often came home and realized that I bought the wrong size or that I misinterpreted what the salesperson said.
  • Sensory differences and cognitive rigidity: While this does not seem to directly relate to money management, it may impact spending. The following is Evguenia's experience: "When I walk into a store, I am overwhelmed by sights, sounds, and people. Even having prepared in advance, I can get distracted by other things in the store before I find the item I came for, which can make me confused. If there is anything unexpected about the item that I have not found throughout my research, like a wider shoe size than usual, it throws me off - I tend to buy the item anyway, since that is what I have prepared myself for. When I bring the item home, I either become anxious about going back to the store and facing a new situation with returning the item, or it takes me some time to get used to the fact that the item is not the best choice, after all. I have already spent about two hundred dollars buying the wrong items that way, and have often ended up giving them away for free." This is because it may be very difficult to sell an item once you have bought it, especially at a near-original price.

 

There are several possible solutions to the above problems. These solutions will require effort and dedication in the beginning. However, once one starts utilizing these strategies, it will become much easier and more routine to incorporate them into one's daily life.

 

  • Create a budget for each month, in the form of a checklist. Once you have completed each transaction, put a checkmark beside it, along with the actual amount you have spent on each transaction. Once you are done with all of the spending, compare the actual total amount you have spent to the total amount you have planned to spend. A sample budget may look like this:

 

JULU

Items

Planned ($)

Spent ($)

Rent

830.06

830.06

Groceries Week 1

50.00

57.20

Groceries Week 2

50.00

51.68

Groceries Week 3

50.00

49.50

Groceries Week 4

50.00

54.30

Eating Out

30.00

35.01

Total for the Month ($)

1060.06

1077.75


 

  • Do not buy things spontaneously: Stores often put out attractive items, like snacks, in the most visible places to encourage more spending. Clothing stores also tend to scatter all types of items around in order to encourage distraction and thus more buys. To avoid temptations, make a shopping list whenever you go shopping and buy only the items on that list. It is a good idea to keep a day planner and to write down anything that needs to be bought right away, such as when your toilet paper runs out. That way, later, you could just go through what you have written during the week in your day planner and put it together in your shopping list.
  • Do not go out for expensive occasions, like dinners, clubbing, or cinema, with friends who push you to spend more than you have planned to spend. Instead, you could either tell them that you do not want to go out or that you are busy. If going out with these people is absolutely necessary, such as for their birthday, make sure that you have planned to spend a certain maximum amount and do not exceed it. You may still remain friends with these people, but only spend time with them by enjoying less costly activities, such as meeting for coffee or coming over to each other's home.
  • When you have communication differences and more sensitivity to your surroundings, perhaps along with processing delays when it comes to new stimuli and change, you may need to compensate for this by thoroughly researching for any novel purchase you make, i.e. any particular item which you do not routinely buy already. For example, if you buy almost the same groceries every week, that is not a novel purchase and does not need to be researched in advance. You know what to expect when buying these items. However, buying new shoes, for example, needs to be prepared for in advance. With shoes, you need to know what your size is, how to test whether shoes are the right size, what you should ask the storekeeper (do the shoes stretch?), what to look for (is the shoe too narrow? too wide? how much can I move my foot inside the shoe?). When being overwhelmed by stimuli in the store, your physical senses may not function properly. Therefore, you need to plan out the exact steps you will take once you get to the store and start surveying the item you would like to buy. This can either be done through independent research, consulting with people you trust (i.e. parents, partner, close friends) or you may even get someone who knows you well to go to the store with you and help you shop. From his experiences with buying a car, Todd has learned that he needs to do more research before buying something and that he needs to not rush into things. He didn't take the time to think through his purchases because the process of making the purchase was too overwhelming for him.
  • Remember that little things add up. Keep a record of what you spend. Write down everything you spend money on, even the smallest things. Add up the total amounts at the end of the week, month, year, etc. which allows you to see how much you are spending on little things like snacks, candies, drinks, accessories, etc.
  • Make the concept of money visual. Spreadsheet software can be used to create graphs of amounts spent - pie charts can be especially useful. Another way of showing a budget visually is to create a pyramid with different amounts in different layers. The foundation layer would be the basic amount needed to survive - essential food, rent, transportation, and hydro/electricity bills if not included. One layer above would be less important spending, such as going out to eat, and the following layers would represent less and less important spending. The person on the spectrum can be taught that the bottom layer needs to be built in order for the top layers to be laid on top of it. This can be used to teach prioritizing in spending.

 

The above steps should help anyone manage their money better, despite any challenges associated with ASD that may arise. However, money management is a complex skill to learn and will take a lot of time, experience, and patience on behalf of both the individual and those who assist him/her in the process.

 

Todd Simkover, MA candidate in Critical Disability Studies, ASD Consultant, Self-Advocate & Speaker

Evguenia Ignatova, BA candidate in Psychology, Special Needs Consultant/Service Provider

 

Key words: Adults, Money Skills, First-hand account 

 
 
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Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
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1.3. Advocating for Yourself: First Hand Perspective

By Evguenia Ignatova

Knowing how to self-advocate is useful in a variety of settings, such as with your friends and relatives, at an educational institution, or on the job. How and when you advocate for yourself depends on how open you wish to be about your diagnosis and on how overt your symptoms are. I have written this tip sheet directly to and for people on the spectrum. However, for any parent, professional, or relative reading this, you are welcome to take this advice and adapt it to the people on the spectrum you are involved with.

The following are some general pointers on self-advocacy: 

Contrary to the popular perception, you do not necessarily need to disclose your actual diagnosis when you advocate for yourself. Instead, you can just provide a description of the specific behaviours that are relevant to the situation at hand. For example, if a teacher or a friend thinks that you are not listening because you are not looking at them when they talk, you can convey that you tend to pay attention better when you are looking away as visual movement is distracting to you making it difficult to both look and listen.

Although every person discloses differently based on individual preferences and abilities, it is crucial to learn how other successful people on the spectrum have disclosed to get a better idea of how to go about it. The book "Coming Out Asperger: Diagnosis, Disclosure, and Self-Confidence" (edited by Dinah Murray) is a collection of people's experiences with disclosure, which includes both good and bad experiences to learn from. Another book I recommend, "Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum" (editor Stephen M. Shore), provides more explicitly practical advice about self-advocacy. 

Knowing yourself well is crucial to successful self-advocacy. Although reading literature about other people on the spectrum, especially biographies, can be very helpful in achieving this goal, real-life experience and feedback from others is absolutely necessary. Start off by joining a local group for people with ASD in order to learn about their experiences and to get their feedback on your behaviours. If you receive any feedback that you perceive as "negative", avoid reacting to it emotionally and just incorporate it into a general picture of what others think of you. Remember, there is no such thing as "good" or "bad"; these are relative terms and are never absolute. As you gather more and more opinions, you will start to see recurring comments. Since so many people have confirmed these comments, they are likely to be the most accurate. Take these comments and think of how you can advocate for yourself accordingly.  

In order to self-advocate appropriately, it is also important to know how the non-autistic brain works and how non-autistics perceive you. People, who are older than you, such as your parents or your teachers, are the best sources of honest opinion and advice as they are most likely to tell you the truth about how you present to others, your strengths, and your weaknesses. While it is okay if you don't want to fit in and conform socially, it is important to understand the non-autistic communication style because you inevitably have to communicate with non-autistics on a regular basis throughout your lifetime. This knowledge will help you understand how you are different and why it can be difficult for you to socialize or to be in certain environments, which is the information you need to self-advocate well. Personally, reading literature about ASD written by non-autistic professionals has helped me understand how non-autistics might perceive me and react to me. As an added bonus, gaining this knowledge will help you appreciate the commonalities that you share with non-autistic people and will thus help you connect more effectively with all people, whether autistic or non-autistic. 

There is a difference between "advocating for yourself" and "making an excuse". Something is more likely to be perceived as an excuse if it is a very general statement. For example, do not just say you do this and that because you have Asperger's or autism. When you advocate for yourself, you need to provide a rational explanation as to why you do something, as well as giving a possible solution to the situation. For example, you may know that you have a tendency to be truthful and straight up with everyone about everything. However, people sometimes get angry with you because you said something they perceived as rude and it hurt their feelings. Next time this happens, saying "sorry, I did this because of my Asperger's/autism" will not suffice, because the person may not even know what Asperger's/autism is or might be misinformed about it. Instead, it would be more helpful to not even disclose the diagnosis, but say something along the lines of: "I apologize for hurting your feelings. I tend to talk very factually about things and don't think about how other people might react to what I say, because my emotional response to things tends to be different from other people. However, I did not have the intention to hurt you. For the future, I want you to know that all of my actions toward you are well-intended." 

Having read the above, you might ask: Why should I go through all this trouble to learn how to advocate for myself? Wouldn't it be easier to try to fit in with everyone else and hope that, someday, you will no longer be autistic? The truth is that, no matter how much you try to fit in, you will still have certain autistic patterns of behaving and thinking, and will thus still have some challenges associated with being on the spectrum. Therefore, you will still need to know how to advocate for yourself if you hope to be successful at reaching the goals you have set out for yourself. Even though you are autistic, you can still do well in life due to the strengths that come with being on the spectrum, but learning self-advocacy skills will be one of your keys to success. While the above points are the general ways you can get better at self-advocating, how you advocate for yourself properly varies across situations. Here are some scenario-specific guidelines for self-advocating: 

With family and friends:

Give them some in-depth information about autism/Asperger's to read through before you begin to bring up specific things about you that you want them to understand. You have a close enough relationship with these people to be able to have them spend extended periods of time researching about the condition. The people who are not as close to you, like co-workers or teachers, will not have the same commitment to improving your life as they are busy and have a lot of other work to do/clients to serve. It is also not part of their responsibility to provide you with extensive attention. 

At school/college/university:

If you need any additional accommodations to the ones you are getting through disability services or as part of your IEP, you need to be proactive.  I believe that anything you might have difficulty, with which could surface in the curriculum, needs to be addressed within the first week of class, preferably during the first class. If you have difficulty with group work, for example, you need to ask your instructor whether there will be any group work happening in this class. You will also need to tell the instructor that group work tends to be difficult for you because of your communication struggles and ask how the instructor could possibly accommodate for this. The curriculum sometimes changes throughout the year, so the instructor will need to know about any and all accommodations that you might need. Also, if you are still in grade school and are not satisfied with your school environment, make sure you attend your IEP meetings and let your needs be known. You need to go to school and it is up to you to make it a stimulating, interesting learning experience.

At work:

When advocating for yourself at work, the most important part is to explain what specific accommodations can help you when solving any challenges. People at work are very busy and need to get their work done no matter what. Therefore, if you have difficulty with any of the work you are given, you need to provide specific information as to how the employer can accommodate for you. That way, the employer is less likely to get annoyed with you because you have shown that you are still capable of doing the work despite your challenges.

Remember to always put an emphasis on your strengths and to take on responsibilities that make the most use of your abilities, not disabilities. Proper self-advocacy will allow your challenges to not appear strange or annoying to others. This will allow people to pay more attention to what you can do as opposed to trying to figure out ways to accommodate you. Additionally, knowing how to advocate for yourself will show others that you are responsible, aware of your own behaviours, can speak up for yourself, and have the capacity to problem-solve well. These are all important life-skills to learn and will help you on your path to success.

 


 

 
 
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Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
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1.4. Tips for Maintaining Boundaries to Ensure Comfort and Personal Safety

By Todd Simkover, MA Candidate and Evguenia Ignatova, BA Candidate

Many people have difficulty with understanding what should and should not be revealed to others. When you have any interaction with another individual, whether it is a checkout clerk or a classmate, there are certain things you are allowed to reveal and other information you are not supposed to divulge. The reason why such rules are in place is to maintain order in relationships among people. Such order can only be preserved if your own feelings are undisturbed (not upset), other people's feelings are undisturbed, and the exchanges among people constitute equal contributions from each of the parties involved and reflect the closeness of the relationship between the two individuals. The following are some tips for maintaining the comfort of yourself and others:

  • When interacting with people you do not know well, generally try to stay away from talking about religion, politics, and sexual matters, unless you have met due to a common goal related to any of these topics, such as a church. All of the above are sensitive topics because people have very different views on these topics and tend to get personally attached to their views and choices related to these three topics. Therefore, if you say or do something that openly contradicts that person's views, that individual may become strongly offended and may not want to continue interacting with you.
  • Do not talk about any private bodily functions at the dinner table, because visualizing these things while eating will gross most people out and thus make them lose their appetite. Generally, do not talk about the details of any health problems or any bodily functions to anyone except for your doctor, family or friends you have frequently interacted with.
  • Do not ask someone personal questions until you have found out what the other person is comfortable talking about. Examples of personal questions include asking someone about whether he/she has been diagnosed with anything and with what, asking about someone's marital status, age, or sexual orientation. If you have met someone new and are unsure of how much information this person feels comfortable sharing, just ask him or her about it. Conversely, if the other person asks questions that you feel are too personal, you could tell the person that you do not feel like sharing this information about yourself. Similarly, if talking about a certain topic or subject makes you feel uncomfortable, you are free to say that to the other person and then switch the topic.
  • Try to refrain from making negative personal remarks to other people. Examples of such remarks include "you are so stupid" and "you are too stubborn" - anything that directly describes the other individual is a personal remark. Making these kinds of comments to other people is risky because each person will interpret a comment like this differently. As a result, even an innocent comment may be taken as offensive by the individual. While people sometimes make such remarks jokingly, Evguenia suggests staying away from even trying it if you generally have difficulty understanding social context and reading non-verbal cues.
  • When feeling angry or frustrated in public, cope with your emotions on the spot instead of holding them in as this could later result in an emotional outburst. The possible consequence of such an outburst can include loss of a job, friends and reputation. In order to manage your emotions, you could talk to someone, write down your feelings, or just take a break to compose yourself. Additionally, if the reason for these emotions is a problem with a specific person, you need to approach that person after having calmed down and then clear up the issue with him or her.

A technique Evguenia uses to maintain personal boundaries while not invading the boundaries of others is to restrain herself from talking about anything that does not relate to the purpose of a situation. For example, at work, she will only talk about work-related things and refrain from mentioning anything about her personal life or any other topic. This has been helpful in keeping her from overstepping boundaries. In this case, it is better to be extra cautious than to let yourself slip up, because it can be very easy to damage one's social reputation.  All social boundaries are important, particularly in any formal setting, such as on the job, or with anyone who is in higher authority than you, such as your professor or your extended family.

There are certain boundaries that, if crossed, are likely to put you and your belongings at an immediate risk or may significantly affect your chances of furthering your career. The following are some examples of such boundaries being crossed.

  • Sharing your confidential information in potentially public spaces. Be careful as to where you give out your credit card information, your social insurance number, your income amount, etc. For example, on the Internet, it is most safe to only share your credit card information on websites where you can pay through PayPal or websites that are widely known and purchased at, such as CafePress.com or Amazon.com. If you buy items from a private retailer through Amazon.com or Ebay.com, make sure that the seller's rating is very high and that the reviews are genuine. Always look for what the worst reviews have said. Todd once fell for a scam where a woman on an Internet dating website offered to talk over webcam. However, she said that in order for him to be able to see her on webcam, he had to go on this website and sign up first, with the sign-up process including giving his credit card information. Since she told him that he could get the first 24 hours free, he signed up and then tried to cancel before the 24 hours were up in order to avoid getting charged, but he ended up being charged anyway.
  • If you use a social media website, such as Facebook, Twitter or YouTube, it is important for you to know what kind of information is appropriate to share with whom. For example, employers often look up job applicants online in order to get a better idea of whom they are hiring. Therefore, it is important to restrict how much of your profile is visible to the public. The pictures you put up can communicate different things to different people, as well as your wall posts, so it might be best to hide your pictures and your wall posts from anyone who is not on your friends list. Also, do not try to add people who are in higher authority than you, such as your teacher, professor or manager, since you have a strictly formal relationship with these people. Again, you do not know how others can interpret things you post on your profile and affect your relationship with them, which may affect your career in the future. If you have your address and/or phone number posted, make sure that everyone who sees this information is someone you can trust to not do anything to you that will invade your personal space, such as prank calling or stalking you. You may be able to determine whom you can and can't trust by observing whether the person's words logically match the person's actions, whether he or she listens to you and follows what you say (respects your feelings and thoughts) or at least tries to do so, and whether he or she appears to be hiding something important from you by changing the subject every time you talk about it. There are a lot of nuances to knowing whom to trust, so these are just some general guidelines.
  • Sharing information about how much money you are carrying and about your valuables (i.e. expensive items such as iPods, laptops, cell phones, Kindles) in a public space. For example, if you announce at school that you have an expensive laptop in your locker, you are significantly increasing the chances of someone breaking into your locker and taking it. Examples of public spaces include school, workplace, public social destinations such as coffee shops, restaurants or clubs, or other people's homes. Revealing such information on an online social networking site can also indirectly lead to a greater likelihood of someone going after your possessions.
  • Be careful about sharing confidential information such as your age, your cultural background, health status, disabilities, income, or marital status. Although these questions are technically illegal to ask, some interviewers find ways to extract this information from the interviewees in a very subtle way. As making this information available to the employer can easily result in discrimination, you have to be very careful about not revealing anything under the above categories in job interviews.
  • In a work setting, do not divulge confidential or sensitive information about yourself or about the work you are doing (for example, personal information regarding clients). If you are working for a company, sharing confidential information is likely to be illegal and may result in you being either fired or sued. If you provide services independently be aware of privacy legislation and act accordingly or people will lose trust in you, which will damage your reputation and result in fewer opportunities for you.

 

To limit anxiety-provoking and risky situations, try to avoid putting yourself in any of the above scenarios. Think about how these or similar scenarios could happen in your life and brainstorm the possible ways to prevent them from happening. Hopefully these tips will help you to improve your own well-being as well as your relationships with others.

 

Todd Simkover, MA Candidate in Critical Disability Studies, ASD Consultant, Self-Advocate & Speaker

Evguenia Ignatova, BA Candidate in Psychology, Special Needs Consultant/Service Provider

 

 

Keywords: Adults, adolescents, friendships, first-hand account, job skills, relationships, self-advocacy, social interaction

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
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1.5. Addressing Mental Health Issues

by:Lillian Burke PhD, The Redpath Centre, Kevin P. Stoddart PhD, The Redpath Centre & University of Toronto

This article summarizes some of the information contained in the report: “Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Complex Needs in Unprepared Systems”.

Mental health disorders in youth and adults with Autism Spectrum Disorder (ASD) pose a significant clinical problem and often have a marked effect on their quality of life. Anxiety disorders and mood disorders occur at a higher rate in individuals with ASD compared to the general population. However, the dearth of services for youth and adults on the spectrum means that mental health issues may not be adequately addressed. “The implications of not proactively addressing the co-morbid mental health issues in ASDs concern clinicians in the field of autism, as well as the individuals themselves, and their families” (Stoddart, Burke & King, 2013, p, 84). This lack of recognition is exemplified when an individual on the autism spectrum is not diagnosed or treated as having ASD in the mental health system—or alternatively, when a person receives services relating only to the features of autism, and cannot access generic mental health services due to reluctance to treat somebody on the autism spectrum.

Ghaziuddin (2005) proposes reasons why the prevalence of mental health disorders concurrent with ASD is poorly understood. Among these, a shortage of trained or experienced professionals in the field of ASD, the stigma associated with a mental health diagnosis, and the “vagaries” of the diagnostic system. Although ASD rarely occurs in isolation of other symptoms, clinicians continue to be reluctant to offer multiple diagnostic labels. Stoddart, Burke and King (2013) note the impact of ‘diagnostic overshadowing’ (i.e., symptoms or behaviours are attributed to the ASD versus a psychiatric disorder) and the old notion that people with ASD are unable to feel emotions. Application of multiple diagnostic labels (such as Asperger Syndrome and anxiety), promote understanding of an individual’s challenges and point the way to potential and appropriate treatment(s).

For individuals with a concurrent intellectual disability (ID) and ASD, it is known that the presentation of mental health disorders may be somewhat different to the presentation of those without ID. Individuals with ID may also be unable to describe their experiences and symptoms in conventional ways; however, these might be observed in behaviours (e.g. repetitive speech or movements suggestive of anxiety; social withdrawal indicative of depression; changes in sensory- seeking or avoiding behaviours). Attempts have been made to facilitate diagnosis of psychiatric disorders in those with ID through the publication of “Diagnostic Manual-Intellectual Disability” (Fletcher, Loschen, Stavrakaki & First, 2007). It has also been suggested by Bradley and Caldwell (2013) that, ‘due to the “unique neurobiology” of those on the autism spectrum, their psychological and perceptual experiences may be different compared to others’. This may lead to idiosyncratic presentations of mental health issues in those with ASD, as well as misinterpretation of their symptoms.

Through a survey of parents in Great Britain, nearly one-third (Barnard, Harvey, Potter, & Prior, 2001) reported their offspring who had an ASD had already experienced  mental illness. “Where diagnosis was late [mental health issues] rose to 45% of those diagnosed in their 20’s and 50% of those diagnosed after the age of 30” (Barnard et al., 2001, p.22). Among the features of mental illness reported were depression (56%), nervous breakdown or “near breakdown” (11%), and suicidal thoughts or attempts (8%).  

Our recent provincial study (Stoddart, Burke, Muskat et al., 2013) surveyed 480 individuals with ASDs and their care providers about mental health disorders and related processing issues experienced by those 16 years and older. Diagnosed disorders, in order of highest prevalence included: anxiety, depression, learning disorder, attention-deficit/hyperactivity disorder, obsessive compulsive disorder, sensory integration disorder, bipolar disorder, Tourette syndrome, eating disorder, personality disorder and psychosis/schizophrenia spectrum disorder. The high rates of anxiety (45%) and depression (27.9%) are comparable to reported frequencies of these disorders in other research. In spite of these high rates, 31% of respondents believed they experienced mental health issues which remained undiagnosed. Survey respondents also reported on hospital use related to their mental disorders. In the past decade, 20% had required emergency psychiatric services, and 14% had been admitted to hospital.

The lack of understanding, identification and treatment of mental health disorders in those with ASD is a systemic problem. Efforts must be made to ensure those on the spectrum, as well as those supporting them, are aware that mental health issues frequently co-occur with ASD and may have a unique presentation. Existing service and support systems need to integrate their knowledge and resources, and more “dual diagnosis” supports must be made available. When this occurs, the quality of life for Ontarians living with ASD and mental health concerns will improve significantly.

Recommendations for the Community:

  • Facilitate the training of mental health professionals in ASD
  • Provide education on mental health and ASD to professionals in the community who provide supports and services, such as educators and health care providers

Recommendations for the Health Care Provider:

  • Engage in professional development in ASD and mental health
  • Be cognizant of and monitor atypical presentations that may be reflective of mental health issues in those with ASD
  • Develop networks of clinicians with expertise in the field of ASD and mental health
  • Share expertise at workshops and conferences
  • Carry out research on ASD and mental health issues
  • Adapt, through practice and research, evidence-based treatments for mental health disorders to those with ASD (e.g., Cognitive behaviour therapy, medication, psychotherapy, etc.)

Recommendations for the Individual and Family:

  • Maintain documents related to assessments and consultations, treatments and hospital admissions for those with ASD
  • Maintain records of medications, medical/health issues and individual responses to interventions
  • Facilitate communication with the mental health care provider while respecting the independence and confidentiality of the individual with ASD

References

Barnard, J., Harvey, V., Potter, D., & Prior, A. (2001). Ignored or Ineligible: The Reality for Adults with Autistic Spectrum Disorders. London, England: The National Autistic Society.

Bradley, E. & Caldwell, P. (2013). Mental health and autism: Promoting Autism PaVourable Environments (PAVE). Journal on Developmental Disabilities, 19(1), 1-3. Available at www.oadd.org.

Fletcher, R., Loschen, E., Stavrakaki, C. & First, M. (2007).  Diagnostic Manual – Intellectual Disability (DM-ID): A Clinical Guide for Diagnosis of Mental Disorders in Persons with Intellectual Disability. Kingston, NY:  NADD.

Ghaziuddin, M. (2005). Mental health aspects of autism and Asperger’s syndrome. London, UK: Jessica Kingsley Publishers.

Stoddart, K.P., Burke, L. & King, R. (2012). Asperger Syndrome in Adulthood: A Comprehensive Guide for Clinicians. New York, NY: Norton Professional Books.

Stoddart, K.P., Burke, L., Muskat, B., Manett, J., Duhaime, S., Accardi, C., Riosa, P & Bradley, E. (2013). Diversity in Ontario's Youth and Adults with Austism Spectrum Disorders: Complex Needs in Unprepared Systems. Toront, ON: The Redpath Centre. 

About the Authors:

Lillian Burke, PhD is a Psychologist at The Redpath Centre, London, Ontario. Her primary clinical activity is consultation with and assessment of adults who have ASDs. She has a special interest in issues of women and parents on the spectrum and has carried out research and authored chapters and papers relating to adults with ASDs and IDDs.

Kevin P. Stoddart, PhD is Founding Director, The Redpath Centre and Adjunct Professor, Factor-Inwentash Faculty of Social Work, University of Toronto. For over twenty years, his clinical focus has been children, youth and adults with ASDs, primarily Asperger Syndrome, and the co-morbid social and mental health problems that affect them.

 
 
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Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
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1.6. The Benefits of Doing Drama Productions

By Courtney Weaver

One of Temple Grandin’s pieces of advice for helping children on the spectrum fit in at school is to have them get involved in special interest clubs because there would be other classmates who have at least the one common interest to do something together with (from her book The Way I See It). I’ve certainly had some of my best moments in school while being in a special interest extra-curricular activity. For me, this was participating in school drama productions.

Now I know that can sound intimidating for a lot of people-getting up and performing in front of an audience can be so nerve racking. While getting nervous during a drama production is understandable and maybe unavoidable, there are many benefits to being in one. Since almost all of my drama experience was in playing a character on stage, I will be talking about the benefits of performing.

Here they are.

  1. 1. Throwing yourself into a character can give you a break from any negative feelings (e.g. sadness) that you may be feeling in your everyday life which is great since it’s never good to feel negative all the time.
  2. 2. You’re guaranteed to have structure in your interactions with your other cast mates because you have to follow a script and certain cues (such as appearing on or disappearing off stage at certain times to keep the story flow going). Now there may be some unexpected mishaps that occur, but you’ll probably have had a lot of time to think over what your character would do in that situation so the change may not be as disturbing for you.
  3. 3. You might make some friends from the production but even if you don’t, you will all be at least united by your wanting to make the production a success. That’s at least one common bond there!
  4. 4. Being a character can give you the chance to project your voice (singing or speaking) and you can feel bigger and more powerful following that.
  5. 5. You’re accomplishing something and succeeding in something that you’re into, which is incredibly rewarding.
  6. 6. You can also step up and do things like offer treats to everyone. Doing a drama production takes a long time to make and get together and there’s nothing like having a little something sweet to feel good. I did that in high school and at least one other person said that they remembered me for that and I got a lot of thank- yous which is certainly gratifying.
Acting is not something that everyone is interested in so maybe you might want to do more behind the scenes stuff. Those are really important jobs too!

I hope that my listed benefits can help those who decide to either act or work behind the scenes as well as those who want to try to find some way to fit in with others in school.

 

Finally, I would like to add that performing and autism, Asperger’s, etc. are not as mutually exclusive from each other as a lot of people may think. There are people who have been given these and other diagnoses who are successful performers. There is Daryl Hannah (the mermaid from Splash), Susan Boyle (a singer who got her start on Britain’s Got Talent with “I Dreamed a Dream”) and Dan Aykroyd (Raymond from Ghostbusters and the town leader in Christmas with the Kranks) just to name a few. Furthermore, as it turns out from a university study that one of my sisters and I took part in, persons diagnosed with any of the aforementioned labels can actually be surprisingly good voice imitators. One of my favourite high school production memories was during senior year when I participated in a production of Rent both as a group member and as Alexei Darling, a wealthy agent. Before I officially performed along with my fellow cast members, I listened to Alexei’s specific songs from the musical soundtrack (as well as the group songs) and I imitated my character’s pitch and intonation perfectly while also putting my own non-fake spin on her and singing by myself.

Break a leg! You can fit in better at school through involvement in extra curriculars.

1.7. Let's Talk About Sex!

By Courtney Weaver

Let’s face it – teaching kids and teens about sex is hard no matter what. Its awkward, and complicated, and hard to know how much to teach when. While there’s no great clear rules, here’s a top 5 tips for teaching kids and teens with ASD about sex:

  1. 1. Be knowledgeable and comfortable – if you are the person teaching, you need to be comfortable. Know your facts (even if you have to google some terminology first!). And be comfortable with proper terminology – if you can’t say proper labels and words without feeling embarrassed and giggly, then you may not be the right person to teach. Its ok to feel awkward about it, as long as you don’t show it! Be aware of how slang and terminology changes as kids become teenagers and try to generalize to some of those terms over time.
  2. 2. Be direct! People with ASD often have a hard time understanding language that is abstract or indirect. Give short, clear direct descriptions and answers to questions. Don’t use analogies to explain things, unless you are very certain it is something your child will understand and find relatable.
  3. 3. Separate fact from values – this is tough but important. There are details to learning about sex and sexuality that are simple scientific fact. Based on the level of understanding of your child or teen it may be very appropriate to teach values that surround sex and relationships that are reflective of your family, culture, or religion. Teach the scientific facts, and then teach them in the framework of how it fits into your values.
  4. 4. Use teaching strategies that are familiar – Use the same strategies that work to teach your child other skills – if you know they learn well with lots of visual support, then use that here too. If they learn well from Social Stories, you can certainly teach about sex in Social Stories. 
  5. 5. Be prepared to revisit this – Often learning requires repetition. Think about the other types of language, self care, and academic skills your child has learned, and how much repetition some of those skills may have required. This is no different.

 

There is no time that is too early or too late to start teaching children and teens about their own body, personal independence, and self-care. While some of these skills will be taught in the classroom, many will not be. And for people with ASD, the detail, repetition, or teaching strategies required may not be sufficient – it is important to make sure that they are being provided with ample learning opportunities throughout life!

1.8. Ways to Counteract Peer Pressure

By: Courtney Weaver

Peer pressure is certainly something that should be talked about. How to counter it is equally important to discuss. It is consistently the case that persons diagnosed with Autism Spectrum Disorder (ASD) are bullied at higher rates in schools compared to neurotypical peers. As a result, they are far more likely to experience higher rates of peer pressure. This is also the case in general for persons with disabilities. Over the years, I’ve accumulated several tips for standing up for yourself, almost entirely from personal experience.

Politeness usually wins. Politely decline what you are being pressured to do. Say “No thanks” or “Maybe some other time”. You can end up looking like the polite one in the social situation you’re in while those doing the pressuring can look like the pushy jerks.

Turn the pressure around by playing the “I’m uncomfortable” social card. These days, consent in a lot of social actions is integral. If you’re, for example, dating someone and they are pushing for a new level in your relationship which you are not comfortable with while they are saying that they love you, you turn their pushiness back on them by saying, “If you love me, you wouldn’t be pressuring me into something I’m not comfortable with.” No one has the right to make you feel uncomfortable.

Workplace Situations. In the case of issues pertaining to workplace situations such as employment agreements, be familiar with workplace protections in your province and your particular work environment so that you have some legal backing behind you. Also, look carefully at your employment contract and retain it.

Continually Pressured. If you are continually being pressured to do something after politely declining something, you can ask, “Why do you care so much if I ___? (e.g. smoke, take a drug such as marijuana). Mind you, this would be a last resort measure.

Remember, you are not the one who has to always submit to what others want. By all means, learn to compromise, be nice to others and take an interest in what they do but that does not mean you have to keep diminishing your wants and needs in favour of others’ wants and needs.


1.9. Personal Care and Beauty Tips

By: Courtney Weaver

Have you tried on makeup and it felt unbearably thick on your face? Or maybe there’s uncomfortable tingling/itching. One testimony from an Aspie who was interviewed for the book Aspergirls (one of my favourite books ever) mentioned that she wanted to claw makeup off her face when she tried it. One of the distinguishing traits associated with ASD (Autism Spectrum Disorder) is having a particular sensitivity. This can vary from person to person. Some good examples include sound sensitivity and touch sensitivity. In the case of makeup or other personal care products, if you have a reaction to them, your reaction is also a tactile (touch) kind.

Others may consider this wacky but this kind of reaction to personal care items and cosmetics might actually be a very good body defense mechanism that is letting you know that you should not be applying this soap, lipstick etc. on your body. I learned from a couple of moms who have taught children on the autism spectrum as well as an organic make-up artist that there are a lot of chemicals which are not good for your skin that are in a lot of beauty and personal care products. This is allowed due to no seriously reinforced legislation on what goes into these kinds of products.

But don’t worry. This is not the case for every personal care or beauty product. I’ve got a variety of products from different brands, from L’Oréal Paris to Covergirl to Burt’s Bees. How can you figure out what are good cosmetic/care products the next time you go shopping? Do you have to buy very expensive organic products? The answer is no, you don’t necessarily have to buy costly organic products (unless that is the only thing that your body will not react to). I will put down a brief list of chemicals to look out for the next time you go shopping. I found the names of these chemicals in a cosmetics paper published by Queen’s University (The Perils of Cosmetics). These include: parabens, sulfates, formaldehyde and carcinogens. How can you figure out if any of these are in a product?

There are some basic steps that you can take. First, you must look at the ingredients list in whatever it is you are thinking about purchasing. Or look at any labels on the product stating something like “paraben free”. If neither of these are indicated on the product itself, you can always look up the product’s ingredients online (usually on the website of the company that makes the product or if not, on drugstore.com. I’ve found it very handy). Make sure that the website is a legit one (e.g. there’s a company address provided somewhere at the bottom of the page). If organic products are the only things that you can apply on yourself, Burt’s Bees is a good go-to brand since it is not so expensive.

Now, these tips are for those who are interested in personal care/makeup but found that they are sensitive to, or even get reactions from, these types of products and/or want to live a healthier lifestyle.

I hope that these tips have helped and that you start feeling better skin-wise and mentally. When you feel good inside, it gets reflected on the outside to others.