1. 5 Recreation, Leisure and Health
1.1. Gaming Console Setup and Considerations for Individuals with ASD

Tip Sheet                                  

 
André Bentivoglio, teacher, specialist in technology in the classroom and special education

Congratulations! You’ve decided to make the plunge and purchase a gaming system for your (inner) child. Currently there are three popular gaming consoles: Sony PS3, Nintendo Wii (rumored to be succeeded by the Nintendo U around the 2012 holidays) and the Microsoft X-box. While each unit has its pros and cons, each unit seems to leapfrog the other year after year. 

Nintendo started the “movement” contest by releasing the Wii with Wii remotes (also called Wiimotes). These wiimotes allow players to participate in most games by moving more than their thumbs. Thanks to some sophisticated sensors in the Wiimotes the console can detect 3 dimensional movements of the joystick and thus the player. For the first time in the home video game market, a player’s swing of a racket truly mimics a player moving his arm rather than simply pressing a button. 

Microsoft later released the X-box Kinect for its console. The Kinect has dual cameras that watch the player in 3-d creating an image of him while tracking the position of his head, hands, feet and torso. This tracking device allows the player to control his avatar (on screen game character) with actual body movements.

Sony’s response to the movement party was the release of an “eye”. A single camera device that watches glowing orbs attached to the ends of the joysticks to judge the players movements. 

Your decision on which console to purchase may include such considerations as:

  • screen resolution (both the PS3 and X-box can display an HD picture in 1080p, the Wii cannot),
  • availability of a blue-ray player (Sony has this capability, while neither the X-box nor the Wii does, although some ingenious users have found ways to modify their consoles to enable this feature while simultaneously voiding their warranties),
  • the ability to connect to your home network and stream photos and movies,
  • the ability to play on-line,
  • or simply price (Nintendo Wii is the least expensive).
Regardless of which console you choose, the following are a few basic tips to help you set up a gaming friendly space: 
 
Location:

  1. Basement is best: some active games encourage you to jump, lunge and run.
  2. Space: You want at least a 10’ to 15’ (preferably more) arc of space in front of your TV so that you’re not bumping into furniture or other players.
  3. Distance: Don’t put it in the same room as the fine china.
TV size:

  1. 46” widescreen at a minimum. This allows you to truly see everything in the game. The consoles are able to take advantage of the widescreen and fill it entirely, sometimes with minute details.
  2. If your budget allows, consider 55” or larger as this will enhance the overall visual gaming experience. TV’s are fairly inexpensive now. If you’re not too choosy, a 60” HD 1080p TV can be had for under $1000. (Retailers will use any excuse to put units on special: Christmas, Super Bowl, Father’s Day and yes, even Mother’s Day). Besides, we are all visual learners. Don’t you want your child to have every advantage possible as he frags the baddies?
  3. Some games may seem very bright especially on new televisions. You may need to dim the overall brightness to a level the intended players can tolerate. Most new televisions have a gaming mode that is in fact brighter. Do not hesitate to change the settings. In most cases, you can create custom settings. You can then rename these settings according to a player’s name.
  4. Some games have bright, flashing lights and quick moving imagery. While this may seem exciting and draw and maintain the player’s attention, it is important to monitor each individual’s response to this visual input. In some rare circumstances, flashing lights have induced epileptic seizures. 
Sound:

  1. While not absolutely necessary, a decent sound system adds to realism of the games. Hearing the horse neigh or the crowd cheer can add to that positive feedback.
  2. A good-subwoofer creating that deep bass adds to the rumble of a car’s engine or a jet’s thrust. (It can always be turned down or muted if sound is an issue).
  3. If a player is sensitive to sound, simply turn down the volume or have everyone wear hearing protection.
Games: 

  1. Rent a game: If possible, rent the game that interests your child before purchasing it (or try to borrow it from a friend). This will allow you to be sure that it meets your expectations. There is nothing worse than finding a game boring after spending $75 on it.
  2. M for mature. Be aware that not every game will be appropriate for your child. The games with the “mature content” sticker are not for the faint of heart. As with movies that are “R” rated, they may have colorful language or depict scenes that are inappropriate for your child.
  3. Try to match gaming interests for the new user. It may take a few attempts before finding one that “clicks”. Many games are based on sports, others on movies such as: Batman, Star Wars, Harry Potter to name but a few. Sports games are popular as well as precision is not necessarily required to succeed.
  4. Be sure to check for warning labels on the reverse side with respect to flashing lights. If unsure, ask the clerk if there is a demo available in store to try. Most in-store demo consoles have a variety of games that can be sampled. As an alternative, you may be able to download a portion of the game directly to your home console. These demos will however be limited in terms of game play.

Some additional benefits:

Gaming allows teaching of some essential social skills, while having fun:

  1. Sharing (Turn taking): Turn-based games provide opportunities for each player to practice waiting for their turn, depending on the game.
  2. Cooperation: Some games encourage players to cooperate by requiring the players to work together in order for the game to continue to the next level or play area. For example, they may need to activate certain doors or levers simultaneously. 
  3. Modeling: You can take the opportunity to model certain movements. As mentioned above, most people on the autism spectrum are visual learners. Take the opportunity to demonstrate a good stance or a good swing. You can be the “how-to” person and create a positive relationship. Some games, such as “Wii Fit” instruct participants on how to maintain a certain body position by modeling it for them on screen. Some games offer more advice than others.
  4. Sportsmanship: This is a great opportunity to model positive social behaviour. Encourage others with expressions such as: “good shot”, “nice hit”, “that was cool”, “try it again”. After a period of time, the other players may start to use these same expressions. 

Accessories:

  • Skins: also called wraps, are available for the consoles themselves or the controllers. These are similar to cell phone cases and can protect your investment by giving them a rubber casing. (Important as they will often be dropped).
  • Sports packs: you can snap a Wiimote into a plastic tennis racket or a golf club thus adding to the game’s illusion. (Warning: be sure to attach the safety strap to the player’s wrist as a flying Wiimote can quickly and easily damage a TV).
  • Wii Fit balance board (exclusive to the Nintendo Wii) allows the user to participate in yoga classes or ski competitions by shifting his or her body weight on the balance board.
Last but not least, remember to have fun!
 

Keywords: play, leisure, recreation, family


 

 


 

 
 
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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. Yoga for Relaxation and Flexibility

Tip Sheet

André Bentivoglio, Teacher, specialist in technology in the classroom and special education

 
Say it with me… mmmmmmm [relaxing meditating hum]. You’ve decided to try yoga at home.  That’s great!  Yoga can increase flexibility, decrease the chance of injury and allow for quicker recovery from strenuous physical activity.  Over time, yoga can also contribute to feelings of calm and relaxation. Things that benefit everyone! Your inner Zen will thank you. 

Having said this, it may take awhile to convince your significant other, children or child with autism to persist through an entire session.  This tip sheet will help you choose equipment in order to create a suitable environment for doing yoga at home.

Location Setup

  1. A carpeted floor (everyone will likely be barefoot). An adjacent fireplace or indoor waterfall instantly ratchets up the Zen meter (as long as your child is not distracted by or attracted to these).
  2. Space: You want at least 8’ x 8’ if doing yoga alone.  8’ x 12’ for doing yoga with your child.  Ideally, you want to ensure at least a body length distance away from others or furniture. This helps ensure safety should someone not instantly master a balance pose and fall as a result.
  3. Lighting should be dimmed.  Diffuse or dim the lighting in order to darken the room.  This reduces unnecessary sensory input, and creates a calming environment.  Consider using battery-operated candles.  They give off just enough light and are of course fire-safe.

 

Clothing and Equipment

  1. A large screen TV allows everyone to see the instructor’s poses with greater detail.  Try to use the largest one in your home (a room used as a home theater would be great, doing double duty as a home yoga area).
  2. A good quality yoga mat.  Avoid the use of exercise mats, as they are often too spongy for yoga.  A good quality yoga mat helps prevent feet from slipping and is better for maintaining poses.  It will also not curl up or slide on the floor.
  3. Yoga blocks.  These are usually constructed of wood or foam.  They are mostly used as an option when one cannot bend far enough to reach the floor or balance adequately. They are also good for beginners.
  4. Yoga clothing.  No, one cannot wear designer jeans.  This is, however, an opportunity to wear yoga pants for their intended purpose.  Clothing should be snug but not constricting.  Yoga clothing should bend and stretch with body movements and ideally wick away moisture (sweat).
  5. Try to diminish ambient noise while doing yoga.  It can be very distracting to have a loud dishwasher or washing machine thumping and thrashing away in the next room.
  6. Turn off cell phones to help focus on the yoga.  Putting phones on vibrate is not enough as they will still cause distractions and it’s only natural to want to see who is e-mailing, texting or calling. 

 

What Kind of Yoga and Where to Get It:

  1. There are many different types of yoga with exotic sounding names: bikram, hatha and kundalini to name a few.  My suggestion: beginner.  You want to make first experiences pleasant and achievable.  Avoid choosing a program that is so difficult it becomes overwhelming.
  2. Libraries have vast collections of yoga DVD’s.  Borrow a few at the same time.  Don’t like the first one? Pop in the second.
  3. Cable/satellite providers.  These companies have put a lot of resources into their “on-demand” services.  Sometimes, they include “yoga” programs.  Some are free while others are pay-per-use.
  4. Online sources such as “iTunes” have yoga programs available to download and project in your home theater or simply on a laptop.
  5. Nintendo Wii and Microsoft X-Box Kinect both offer yoga on their gaming consoles.  These are quite interesting as they rely on input from the user.  The Wii requires the use of the “Wii balance board”, while the X-box uses the Kinect sensors to measure body positions.  Either of these options may be a bridge to help convince your child to join in.
  6. Regular TV.  Many TV stations broadcast yoga classes for home use as part of their regular schedule.  Can’t wake up at 6 a.m.? Set the VCR or PVR and play it back at your leisure.

 

How to Encourage a Reluctant Child or Youth to Participate in this Activity:

  1. Prepare him or her ahead of time for the activity by placing it on a visual schedule. You can also incorporate a mini-schedule to show the poses or exercises that will be done during the session.
  2. Invite him or her to participate in choosing the type of yoga, length of activity and time of day to conduct the exercise.
  3. Encourage him or her to help prepare the room, i.e. shutting off the lights (or dimming to their comfort level), closing the blinds, laying down the mats, etc.
  4. Allow him or her to select comfortable clothing.
  5. Start with a short time period and gradually increase the amount of time to help ensure success.  A general rule of thumb is ‘start low and go slow’.
  6. Break down a pose into steps (task analysis) and teach one step at a time to facilitate learning.
  7. Make the time a pose will be maintained concrete by counting out loud or showing fingers. Provide physical prompts if needed to achieve success. 
  8. Incorporate the use of props to help teach certain skills. Yoga blocks are mentioned above. You may also consider using scent jars or stickers and a feather, cotton ball or bubbles to teach deep breathing.
  9. Consider using a visual countdown timer (an iPhone timer works well but be sure to put your phone in airplane mode to avoid being distracted by the incoming text message). The timer could signal that the desired length of time performing yoga exercises has ended. Your child can now advance the DVD to the end where he or she can enjoy the relaxation poses, lying on their back breathing slowly and calmly.
  10. Remember to include reinforcement for trying out the yoga and for sticking with it.

 

As with any new physical activity, it is important to exercise caution when starting out.  Should you or your child have any pre-existing medical concerns or physical restrictions, consult with your health care professional before starting a yoga program. A good rule of thumb for anyone participating in a fitness activity is that if a movement is painful, re-adjust, slow down or stop altogether.  Identify how your child can communicate that a movement is uncomfortable or painful. Consider consulting an expert before attempting that movement again as modifications may be required.

Above all, don’t forget to relax, enjoy and “Namaste”.

 


 

Keywords: recreation, leisure, relaxation, health, coping

 

 

 
 
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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. Accessing Inclusive Personal Training Programs for Young Adults with Autism: Strategies for Overcoming Barriers

Background

In Canada, studies have shown that only approximately 3% of individuals with a disability are actively engaged in organized sport.[1] However, educators and others are becoming increasingly aware of the benefits of personal fitness for students with special education needs and typically developing children alike.[2] And some are convinced that physical education has a central role to play in building self-esteem and social skills that in turn lead to a more active and inclusive lifestyle for young people with autism.

Although more and more young adults with autism are showing interest in accessing personal fitness opportunities, there are few programs outside school settings that are accessible. In addition, few fitness professionals are systematically trained to include people with disabilities in their fitness programs. And few Day programs for adults with disabilities offer inclusive fitness activities.

This article is therefore intended to raise awareness of barriers that people with ASD face in accessing fitness opportunities, offer strategies for designing individualized fitness programs, and suggest the need for future research that explores the impact of personal fitness on people with autism and their communities.

Identifying and Understanding Fitness Barriers

Why do we need to identify and understand fitness barriers as a first step towards overcoming them? Identifying and understanding barriers helps to clarify difficulties experienced by disabled individuals with disabilities who are becoming self-determined and who wish to be part of a particular community.

Sensitivity to barriers experienced by adults with ASD who are accessing fitness opportunities helps caregivers, developmental service workers, and fitness professionals design and implement useful programs.

Emergent data from case study research by the authors suggest that common obstacles to fitness include:

  • environmental accessibility
  •  socio-behavioural; and
  •  economic barriers.

Environmental Accessibility Barriers

Programmatic

The existence of an ASD does not automatically place an individual at risk for physical activity participation. Fitness professionals are able to provide services to “apparently healthy” individuals (individuals with no known medical condition which place them at risk for physical activity participation). Unfortunately, misconceptions about disability and ASD and its relationship to health status remain commonplace. Through awareness and initiative, fitness professionals can play a significant role in increasing the involvement of individuals with ASD in regular physical activity programs.[3] But first they need to overcome the possible misconception that autism is a disease and that only health care professionals are qualified to work with people with ASD.

Physical Accessibility

Individuals with ASD have many of the same strengths and weaknesses that individuals without ASD have when it comes to cardio and strength training abilities. Along with other groups of individuals, such as older adults and those with physical disabilities (e.g., CP, MS, and amputations), people with autism may need adapted equipment to accommodate physical impairments, i.e.:

  • low weight machines and dumbbells;
  • medicine balls with hand straps;
  •  and other universally-designed equipment (e.g., recumbent elliptical ) 

When seeking out a personal trainer, a fitness class, or a fitness facility, it is important that parents and professionals know the right questions to ask to clarify that a particular person or environment is going to meet the needs of the individual with ASD and that the requisite equipment or adaptations are made.

Sample Questions

  • Can my personal assistant attend the facility with me without extra charges?
  • What are the busiest times for the facility? What areas are most crowded and when?
  • Does the facility provide orientation and instructions on how to use equipment?
  • Have any of your personal trainers/fitness specialists supported an individual with ASD or other disability?

For a list of additional helpful questions see http://www.ncpad.org/exercise/fact_sheet.php?sheet=359&view=all .

Socio-Behavioural Barriers

Misconceptions/ Stereotypes and Attitudes of Others

Although fitness professionals might believe that ALL people are being encouraged to be active, stereotypes and misconceptions about autism may impede potential clients with ASD from accessing fitness facilities. And former teachers, caregivers, and adults with ASD themselves may not realize that special fitness needs can be accommodated at public facilities.

For individuals with ASD, participating in a fitness program is often a new experience. New experiences hold social and behavioural challenges, such as:

 

  •  meeting new people;
  •  negotiating a new setting; and
  • participating in a new setting with others.

 

Social accessibility for clients with ASD may take time, but the key to accommodation is flexibility on the part of fitness professionals and others at the fitness facility.

Individuals with ASD who experience behavioural outbursts that include screaming or vocalizing can cause tension and apprehension amongst the trainer, support staff and also other clients or members present at a gym. It is important for fitness facilities and professionals to be open to allowing knowledgeable support workers or caregivers into their facilities to help create optimal outcomes, especially at the beginning of a program when routines are being established. At times it may mean that a person with ASD has two support people and the personal trainer working with him or her simultaneously.

For many individuals with ASD it is important to develop routines, and these routines may need to be established gradually, i.e., shorter, more frequent visits to the fitness facility may be necessary. Further, fitness professionals need to be patient, flexible and satisfied with incorporating small changes within established routines to promote successful training.

The Ontarians with Disabilities Act passed in 2005 makes Ontario the first jurisdiction in Canada to implement and enforce mandatory accessibility standards which apply to both the private and public sectors. Many businesses are making efforts to become accessible; however, there needs to be a corporate buy-in by the fitness industry if people with disabilities are to feel they have opportunities for fitness in an inclusive atmosphere.

Economic Barriers

Dependence on Supporters

Many adults with ASD remain dependent on their caregivers (parents or other supporters) for basic needs in many spheres of life, from housing to mental health. This reality means that caregivers are called upon to orchestrate opportunities for fitness. Adults with ASD who live in rural areas face different challenges from those in urban areas, where there are more choices of transportation systems, fitness facilities, and trainers.

Systems Issues

Associated with the dependence of many adults with an ASD upon caregivers is the need to advocate for funding to cover the costs of participation in fitness training. Unless caregivers approach officials about using individualized funds to promote fitness, this area of health and social inclusion is largely ignored.

Persons with an ASD who require intensive supports incur higher costs than other disabled persons. Such costs include:

  • hiring support personnel to mediate a gym membership and bridge communication with a personal trainer; and 
  • arranging and paying for transportation to a fitness facility (i.e., especially if the person with an ASD lives in a rural area)

To convince officials to allow government funding to be used for fitness needs, persons with an ASD themselves, their caregivers, and supporters need to raise awareness of the benefits of fitness.

For example, Ratey (2008) reports research linking aerobic exercise with improved brain function; Hillman, Erickson and Kramer (2008) suggest that physical fitness improves cognition in school children; and, research on the links between physical fitness and mental health has been active for decades.[4]

Strategies for Designing Inclusive Fitness Programs

The suggestions below offer starting points for creating inclusive fitness programs at home, in fitness facilities, or in community groups. Although the components listed below are not exhaustive, we believe that the keys to developing viable programs include acknowledging the role of caregivers in initiating and sustaining programs, identifying assumptions about disability, and aligning assumptions with practices. For more information on strategies for accessing inclusive programs, we recommend the following web sites:

www.allabilitiesfitness.ca

www.topshapeinc.com

www.ncpad.com

www.ala.ca

http://paralympic.ca/

Role of Parents/Caregivers

  • Key to seeking and creating an environment of inclusive fitness
  • Good role model
  •  Initiate community relationships, friendships, access to associations
  • Participate in group exercise
  • Staff at group homes or in day programs must be committee
  •  Seek caregiver/staff workshops
  •  Understand benefits of fitness
Attitudes

 

  •  Teach personal trainers and fitness instructors the social model of disability (i.e., acknowledge and itemize socio-cultural barriers, and understand that disability is distributed within a social structure)

Individualize for Success

  • Use positive terminology
  • Never underestimate a client’s intellect
  • Address specific behaviours and functional limitations by evaluating equipment, environment and teaching exchanges
  • Make programs accessible for clients, i.e., include picture schedules, and provide adapted equipment
  • Offer alternative formats for instruction
  • Use repetition
  • Build in positive reinforcement

 

Exercise Guidelines

  • If necessary, obtain physician consent
  • Understand effects of medication
  • Provide supervision
  • Label machines with pictures
  • Allow time to master a skill
  • Use prompting and task analysis
  • Consider length of activity
  • Model technique
  • Use video to demonstrate
  • Start slowly and increase frequency, intensity, time, type 
  • Teach to practice safety

Find Model Programs

  • Examine existing programs and practices by visiting local programs while they are in session
  • Tailor new programs on such models, but adapt these for specific environments, individual needs, and logistical constraints
  • For some it is helpful to start a home-based program with a personal trainer who is then able to support skill transfer to a new setting, such as a gym or a community program

Future Research

We believe that all people with ASD benefit from personal fitness, and that it is possible to develop inclusive programs that accommodate a diversity of people with ASD. However, systematic research is needed to track general physical activity levels and fitness experiences of adults with autism, and the impact of personal fitness on people with autism of varying ages, interests and abilities.

We also believe that an emphasis on physical education during the high school years needs to be represented in transition planning for young adults. We argue that it is important to take full advantage of school-based resources in the fitness domain to plan for the personal fitness needs of adults with autism who are leaving school. Research is needed to answer the question of whether transition plans that include fitness programs are in fact carried out beyond school. Further, if training does continue in adulthood, fitness programs that are implemented require evaluation.

Finally, fitness professionals require training to be able to include individuals with autism in public and private personal training settings. It is imperative that professional training programs in Education, Developmental Services, and in the Fitness Industry include adapted and inclusive fitness in their certification curricula.

NB. Since 2010 Dawn Campbell and Karin Steiner have been collaborating to provide access to personal training and fitness programs to adults with autism and other disabilities. Together the authors have developed case studies of the fitness experiences of adults with a range of developmental disabilities. This article emerged from conference presentations to the OADD’s Research Special Interest Group (RSIG) in April, 2012 and IMFAR in May, 2012.

To view video of a young man completing his workout routine using a visual schedule and with the aid of a coach visit:

http://www.allabilitiesfitness.ca/#!video

Please note these clips are in English.

 

About the Authors

Karin G. Steiner (Ph.D.) began her career as an English instructor at universities in China and Japan. When her son was diagnosed with autism, she embarked on a second academic career focussed on cognitive theories of autism and developmental psychology. Karin’s publications include articles on teaching theory of mind concepts to young children with autism and her doctoral work explored social understanding in the friendships of adults with developmental disabilities. Karin is the founding Executive Director of New Leaf Link (www.newleaflink.ca), a rural charitable organization dedicated to the community inclusion of adults with developmental disabilities.

Dawn Campbell is an Ontario Certified Teacher, a Personal Training Specialist, and owner of allABILITIES FITNESS (www.allabilitiesfitness.ca). She holds a Bachelor of Education degree from Queen’s University and a degree in Disability Studies from Ryerson University. For the past 15 years Dawn has advocated for the inclusion of people with disabilities and she is the 2011 International Day for Persons with Disabilities Access Award recipient for Kingston, Ontario.


Keywords: Adults, adolescents, health, instruction, leisure, recreation,



[1] 2001 Statistics Canada Participation and Activity Limitation Survey Changing Minds, Changing Lives

https://www.paralympic.ca/en/Programs/Changing-Minds-Changing-Lives.html [retrieved August 31st, 2012]. NB. We have not found studies that itemize general physical activity levels or fitness experiences of people with autism.

[2] The Ontario Curriculum, Grades 1-8: Health and Physical Education, Interim Edition, 2010 (revised)

 

[3] Inclusive Fitness and Lifestyle Services for all (dis)Abilities(2002). Canadian Society for Exercise Physiology (CSEP) http://www.csep.ca.

[4] Hillman, C.H., Erickson, K.I. & Kramer, A.F. (2008). Be smart, exercise your heart:exercise effects on brain and cognition. Nature Reviews Neuroscience, 9, 58-65; Ratey, J.J. (2008) Spark: The revolutionary new science of exercise and the brain. New York: Little, Brown and Company; Paluska, S.A. & Schwenk, T.L. (2000). Physical activity and mental health: Current concepts. Sports Medicine, 29 (3), 167-180.

 
 
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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. Medical and Health Issues

Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Medical and Health Issues

By: Lillian Burke PhD, The Redpath Centre & Elspeth Bradley PhD MBBS, Surrey Place Centre & University of Toronto

The medical and health issues of older youth and adults on the autism spectrum is an area which has not been adequately addressed in the professional literature. Research about children who have autism spectrum disorders (ASD) suggests some medical conditions (e.g., gastrointestinal complaints) are more prevalent than in the general population. It can be assumed many of these medical conditions continue into adulthood. Similarly, there are health issues that typically present in adulthood in the general population that we would also expect to occur in those on the autism spectrum. However, little has been done to determine the prevalence or severity of health issues in adults with ASD.

Our recent provincial study (Stoddart et al., 2013) surveyed individuals with ASD and their carers about physical health and related issues experienced by those 16 and older. Of 480 respondents, 296 medical conditions were reported then grouped by category.  Of these conditions, 92 individuals reported one condition, 48 had two, and 36 reported three. They included disorders of the following systems: brain and spinal cord, digestive, respiratory, immune, liver, kidney and urinary, hormonal and metabolic, and musculoskeletal. Also identified were cardiac disorders, hypertension, vision and hearing impairments, and disorders of skin, sleep and weight. Some of the specific disorders named were epilepsy, headaches, gastroesophageal reflux, irritable bowel syndrome and related disorders, thyroid disorders, diabetes, asthma and allergies, eczema, high blood pressure, high cholesterol, arthritis, scoliosis and fibromyalgia.

With respect to accessing medical service providers, survey respondents made statements such as: “It is difficult to find medical doctors who will accept patients with ASD”; “last two years multiple health problems that were not properly investigated…underserviced area”; “shortage of knowledgeable physicians in the area” (pg. 25). As clinicians, we are sometimes told by adults on the spectrum that their health providers don’t take their medical complaints seriously. In their recent chapter on medical issues in adults with ASD, Burke and Stoddart (2013) quote a client report: “I can’t find a medical doctor who is willing to work with me without the drugs that I get all the side-effects for, unpredictable intended effects, and wild-card effects that don’t show up in the literature at all”.

Individuals on the autism spectrum have “unique neurobiology” (Bradley and Caldwell, 2013). This affects both their perception of and their response to situations. If the impact is true for sensory, movement, emotional, perceptual and other systems of functioning, then why would it not impact their experience of and response to health issues? If it does, this may affect their ability to explain their difficulties in terms that are understood by their health care provider. As a consequence, it may, in some situations, lead to appropriate investigations not being done or inappropriate investigations being done that do not target the underlying cause of the individual’s discomfort.

We know that individuals on the autism spectrum do not always have regular medical appointments. When they do see their health provider, they may have difficulty in communicating their bodily discomforts and experiences. This may be due to not having adequate language or in using unusual descriptive terms, their reluctance to try to explain due to past negative experience, and not always knowing what is “normal”. These will certainly affect the physician’s ability to understand their physical status and physical discomforts.

It is important that steps be implemented to increase the ability of the individual with ASD to explain their health experiences, and for their physician to better understand what the individual is communicating. As information is increasingly becoming available about health issues that may affect those with ASD, screening individuals for these conditions will be important. A family history of medical conditions should be compiled, if possible, with the assistance of a family member, because the individual may not be aware of health issues in extended family members or understand the relevance of others’ health issues to his or her experience. It will also be important that their discomforts are acknowledged, even if their symptoms or their test results are not typical.

Assistance in explaining their symptoms may be achieved by family or other supportive individuals helping to document their experiences prior to a medical appointment; and for the health care provider to have visual tools to aid communication and understanding, as well as tools to guide autism-specific proactive medical care and surveillance across the lifespan (Bradley et al., in preparation).

Recommendations for the community:

  • Build capacity in the health professions (e.g., medicine, nursing, social work, psychology, occupational therapy) by offering and encouraging attendance at ASD workshops and conferences
  • Develop ASD-specific standards of medical care (e.g., practice guidelines) and support (e.g., tools for implementing practices, mentorship programs, professional internships/practica)
  • Develop local clinical networks of health specialists with expertise and/or willingness to work with people with ASD
  • Share expertise and clinical support through presentations, workshops and online discussions. 
  • Make available (e.g., online and in primary care provider offices) information re: health matters in patient-friendly formats (e.g., visual presentation, plain language)
  • Carry out research on ASD-specific health issues and vulnerabilities

 

Recommendations for the health care provider

  • Attend to:
    • office accommodations for patients with ASD (e.g., brief waiting time, reduced office lighting, address sensitivity to touch, etc.)
    • individual communication styles and preferences
    • health vulnerabilities specific to each patient and this patient group as a whole
    • atypical presentation of medical discomforts (e.g., hypo- or hyper-sensitivity)
  • Engage in continuous professional development in ASD-related health updates
Recommendations for the individual and their family:
  • Keep health records and have available when needed:
    • Past health assessments, investigations, treatments, hospital admissions
    • Records of past and current medications and response to these
    • Family history of physical illness and response to medications
  • Document idiosyncratic response to pain and discomfort and share with health care team
  • Find ways to communicate effectively with health care provider while respecting youth/adult need for independence and confidentiality
  • Work with health care providers to encourage meaningful participation of the individual with ASD in their health care
  • Identify and document needs for ASD-specific health care provider accommodations in the office setting
  • Undertake regular health assessments and routine investigations (even if there are no immediate medical concerns)
  • Build relationships with local network of health care providers

 

 

References

Bradley, E., & Caldwell, P. (2013). Mental health and autism: Promoting Autism Favorable Environments (PAVE). Journal on Developmental Disabilities, 19(1), 1-23. Available at:www.oadd.org.

Bradley E., Cameron D., Korossy M., Loh A. & Developmental Disabilities Primary Care Initiative Co-editors (in preparation). Health Watch Table –Autism Spectrum Disorder. In Tools for the primary care of people with developmental disabilities. Available at: www.surreyplace.on.ca.

Burke, L. & Stoddart, K.P. (in press). Medical and health problems in adults with ‘high-functioning autism’ and Asperger syndrome. In F. R. Volkmar, B. Reichow & J. McPartland (Eds), Adolescents and Adults with Autism Spectrum Disorders. NY: Springer Publishing. 

 
Morton-Cooper A. (2004). Health care and the autistic spectrum: a guide for health professionals, parents and carers. Jessica Kingsley Publishers. New York.

National Autistic Society. Patients with autism spectrum disorders: Guidance for health professionals. Available at: www.autism.org.uk 

 
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 Autism Spectrum Disorders: Complex Needs in Unprepared Systems. Toronto, ON: The Redpath Centre.

 

About the Authors:

Lillian Burke, PhD is Psychologist at The Redpath Centre in London, Ontario. Her primary clinical activity is assessment of adults who have ASD. She has a special interest in assessment of and support for women with Asperger Syndrome and other developmental disorders, as well as parents with Asperger Syndrome.

Elspeth Bradley, PhD, MBBS is Psychiatrist-in-Chief, Surrey Place Centre and Associate Professor, Department of Psychiatry University of Toronto. As psychotherapist, psychiatrist, teacher and researcher, she has worked with persons with intellectual disabilities and ASD over the past 30 years both in Canada and the United Kingdom.

 

 

 

 

 

 

 

 
 
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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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1.5. Useful Insights: Improving How People with Autism Spectrum Disorder & Other Developmental Disabilities Use Medication

By: Yona Lunsky and Virginie Cobigo

This article first appeared in Service, Support and Success: The Direct Support Workers Newsletter. Volume 3 – Issue 5

 

When a physician prescribes a patient medication, they have a conversation with one another about how much medication to take each day, the different ways to take the prescription, how the patient will know the medication is working, and any possible side effects caused by the medication. This is an important ongoing dialogue that helps to keep the patient informed, but what happens when a patient is unable to have a conversation or ask questions like this with their doctor? What happens to patients who need assistance with figuring out the answers?

Francine’s Story

My brother had been on numerous medications for almost 10 years. He became very quiet, slowed down and sluggish. He also gained a lot of weight and didn’t have the energy he used to have. Over those 10 years, we began to feel that this was just who he was and forgot about his old energetic self who was always on the go. However, he began to get upset with this sluggish self and slowly became more aggressive and began lashing out, always telling us he didn’t feel well or wasn’t happy. It was a long and painful process, but we eventually realized that he was likely overmedicated. Once this issue was cleared up, we saw a reemergence of his old self. With the right balance of medication, he could be happy and energetic and also have his psychiatric issues under control.

Taken from The Atlas on the Primary Care of Adults with Developmental Disabilities, chapter 6.

Medication use is very common for people with a developmental disability like Autism Spectrum Disorder (ASD). But medications can also lead to problems for someone who might struggle with how to report whether a medication helps or not, or when others aren’t alert to the impact of the side effects. In the story above, Francine and others started to notice that the person before them was not the person they knew and loved. And it was very frustrating for Francine’s brother as well to not feel like himself. Fortunately, they had the patience, motivation, and clinical support to set things straight. Family and caregivers can play a supportive role in monitoring their loved ones use of medication.

Medication training has historically had a focus on “medication dispensing.” This is similar to receiving a prescription from the drugstore with an accompanying piece of information about the prescribed medication, including safety, where to keep medication, how to administer it, when to give it, and how to keep track. While medication safety is terribly important, it is not enough to support people on the spectrum who require assistance in taking medication. We now know that when it comes to medication, a family member or a caregiver needs to be:

  • An advocate who can support those taking medications to be their own advocates in health care discussions,
  • A communicator about the need for medication, and the effectiveness of medication,
  • A teacher about what medications can do, how to take them safely, and how to monitor them, and
  • A monitor who can keep an eye on the effects of medication, and report them to healthcare professionals.

 

What challenges do adults with developmental disabilities, including ASD, face when it comes to medication use?

Adults with ASD and other developmental disabilities are at a higher risk for physical and mental health problems. As a result, they tend to get prescribed many different medications. But it’s very difficult for people with on the spectrum to identify and report side-effects from medication. Also, although medications aren’t necessarily bad, taking too many, not enough, or not the right ones can lead to problems. Not being able to ask questions about the medications or not following instructions can also result in serious issues. The Health Care Access Research and Developmental Disabilities (H-CARDD) Program studied medication use by 52,000 adults with developmental disabilities, including those with ASD, who get their medication paid for by the Ontario Drug Benefit Program. Here are a few things they found:

  • Nearly one in two adults takes two or more medications.
  • One in five receives five or more medications at the same time.
  • Older people, women, and those with diseases receive a lot of medication.
  • Of all the medications given, antipsychotic medications are prescribed most often.
  • One in five adults who take antipsychotic medication may take two at one time. This medication combination can put them at risk for very serious problems, even death.

 

What can families and caregivers do to help people with ASD manage their medication?

Careful monitoring is essential. The families and caregivers should work closely with the person taking the medication and their treatment team to identify the effects of each medication and figure out ways to monitor them objectively. The focus needs to be on observable behaviours, similar to how Francine had observed her brother’s weight gain, his lethargy and aggression. When a family focuses on observable shifts in behavior in their loved ones, they are more likely to minimize side-effects of prescribed medications.

A family member can make a prescribing physician aware of any changes in behaviour in their loved ones, and in response, a physician can find many ways to minimize side-effects. These strategies include:

  • Taking the medication in smaller doses spread over the day.
  • Taking medication with appropriate food.
  • Taking an additional medication to treat specific side-effects.
  • Changing the medication.

 

Remember that some people with ASD and other developmental disabilities might be hypersensitive to medications. For example, dizziness can be an annoyance for anyone, but if you already have problems walking steadily without medication, any additional dizziness could be very dangerous. Small adjustments in medication can make a significant difference for someone affected by side-effects.

What can a family member do to monitor medication use?

Many families do not tend to receive education around medication use, with the exception of explanations about the medications and their side effects which they receive from their pharmacist. Family members who are advocating and supporting a loved one on medication should make sure they know the name and dose of each drug and why it has been prescribed. Local pharmacies can print out this information. It is important to get all prescriptions filled from the same pharmacy. The pharmacist is always available to answer questions about any medication, as well as how different medications interact when taken at the same time. A medication for a physical problem might interact with a medication for a psychiatric issue. Those who prescribe medications need to know the complete list. That’s why it is so important for family members and caregivers to keep track of medications and to keep the family physician updated about all of the medications that are being prescribed. When there are multiple doctors involved, each treating different problems, they may not know about other medications that are unrelated to the problem they’re focused on. It is recommended that family members have a list of medications for every medical appointment. One easy way to do this is to get an updated printout from the pharmacy. While walk-in clinics can be convenient, it is important to remember that their staff also will not have a full picture of the medications being used. It is always better to see a physician who has a history of a loved one. If that can’t happen, at least have up-to-date information available for walk-in appointments. In an emergency, the staff at the hospital emergency department may be able to view the list of current medications covered through the person’s drug benefits plan on the hospital computer. But they may not know that the person being supported is part of a drug plan, so families should be prepared to share that information. A hospital can also call a pharmacy to get that information in an emergency. Family members can help to monitor medication by:

  • Ranking symptoms of the illnesses on a scale of one to 10 and reporting any improvement.
  • Tracking behaviours in a journal to determine whether or not medication is working (for example, what happened when a certain dosage was changed?)
  • Noting side-effects and discussing them with the treatment team.
  • Checking with a doctor and/or pharmacist for drug interactions before new medications are given (prescription or over-the-counter).

 

The input from families or caregivers is very important when making changes to medication and they can help those taking medications to report on how the adjustment is going: are symptoms worse? Are side-effects better? Families can also help a loved one with ASD prepare before a meeting with a health care provider, to give medication feedback.

Sometimes, a family member may be the only person who can help the doctor decide if it is a good time to make changes to a medication regimen. If there are significant changes in a person’s routine or living situation, it might not be the best time to monitor medication changes. After all, it might be impossible to know how much of the change is due to the life situation and how much is due to the medication.

In conclusion

It takes a team-based approach to improve how people with ASD and other developmental disabilities use medications. Family members and caregivers are an important part of that team. Education for adults with ASD and their caregivers on the appropriate use of medications and on monitoring side-effects is important.

More Information

H-CARDD website www.hcardd.ca

LD Medication Guideline: Using Medication to Manage Behavioural Problems in Adults with Learning

Disabilities (University of Birmingham)

http://www.birmingham.ac.uk/research/activity/ld-medication-guide/index.aspx

Project MED Educational Booklets and International Consensus Handbook (Nisonger Center) - Philip Green http://nisonger.osu.edu/projectmed

ATN/AIR-P Medication Decision Aid: for Families of children with ASD (Autism Treatment Network)

http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-canuse/medication-guide

Auditing Psychotropic Medication Therapy (Surrey Place Centre) http://www.surreyplace.on.ca/Documents/Auditing%20Psychotropic%20Medication%20Therapy.pdf

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1.6. 1/4 How Does ASD Affect Sleep?

https://www.tuck.com/autism-spectrum-disorder-and-sleep/

A 2009 study published in Sleep Medicine Reviews noted parents report sleep problems for children with ASD at a rate of 50% to 80%; by comparison, this rate fell between 9% and 50% for children that had not been diagnosed with ASD. The rate for children with ASD was also higher than the rate for children with non-ASD developmental disabilities.

In a recent study titled ‘Sleep Problems and Autism’, UK-based advocacy group Research Autism noted that the following sleep issues are common among children and adults with ASD.

  • Difficulty with sleep onset, or falling asleep
  • Difficulty with sleep maintenance, or staying asleep throughout the night
  • Early morning waking
  • Short-duration sleeping
  • Sleep fragmentation, characterized by erratic sleep patterns throughout the night
  • Hyperarousal, or heightened anxiety around bedtime
  • Excessive daytime sleepiness

The study also pinpointed several underlying causes for these sleep problems that are directly or indirectly related to the individual’s ASD diagnosis. These include:

  • Irregular circadian rhythm: The circadian rhythm is the 24-hour biological clock that regulates the sleep-wake cycle in humans based on sunlight, temperature, and other environmental factors. The circadian rhythm is processed in the brain, and  other environmental factors. The circadian rhythm is processed in the brain, and many people with ASD also exhibit irregularities with their sleep-wake cycle. Additionally, some studies have noted a link between children with ASD and irregular production of melatonin, a natural hormone that helps regulate circadian rhythm.
  • Mental health disorders: Conditions like anxiety and depression are often co-morbid with ASD; these conditions often lead to insomnia and other sleep disorders. Studies have also suggested that as many as half of all children with ASD also exhibit symptoms of attention-deficit hyperactive disorder (ADHD), which can cause elevated moods around bedtime.
  • Medical problems: Epilepsy is often co-morbid with ASD, and seizures can greatly impact sleep — even on a regular basis, in severe cases. Other common medical issues among people with ASD include constipation, diarrhea, and acid reflux.
  • Medication side effects: People with ASD who take medication may experience side effects that interfere with sleep. Selective serotonin reuptake inhibitors (SSRIs), for instance, may cause agitation and hyperactivity prior to bedtime. Antipsychotics like haloperidol and risperidone, on the other hand, may cause excessive drowsiness during the day that leads to sleep onset and sleep maintenance problems. Please scroll down to the ‘Treatment’ section for more information about ASD medications.

People with ASD often struggle with daily pressures and interactions more than individuals who do not live with the disorder. Lack of sleep can greatly exacerbate the feelings of distress and anxiety that they experience on a frequent basis. As a result, may people with ASD who have trouble sleeping may struggle greatly with employment, education, and social interaction — all of which can impact their outlook on life.

Persistent sleep problems in people with ASD may indicate a sleep disorder. Insomnia is the most commonly reported sleep disorder among adults and children with ASD. Insomnia is defined as difficulty falling and/or remaining asleep on a nightly or semi-nightly basis for a period of more than one month. A study published in Sleep found that 66% of children with ASD reported insomnia symptoms. A similar study from 2003 found that 75% to 90% of adults then-diagnosed with Asperger syndrome reported insomnia symptoms in questionnaires or sleep diaries.

In addition, parasomnias such as frequent nightmares, night terrors, and enuresis (bedwetting) have been widely reported among children with ASD, particularly those once diagnosed with Asperger syndrome. The child’s inability to express their fears and discomforts upon waking — often due to ASD — can complicate the way parasomnias are addressed and treated. Additionally, children with ASD often wake up in the middle of the night and engage in ‘time-inappropriate’ activities like playing with toys or reading aloud.

Sleep researchers are currently studying the relationships between other sleep disorders and ASD. For example, Dr. Steven Park recently noted a possible connection between ASD and obstructive sleep apnea (OSA), a condition characterized by temporary loss of breath during sleep resulting from blockage in the primary airway that restricts breathing. Dr. Park’s theory suggests that the intracranial hypertension found in many babies and infants with ASD may also cause the child’s jaw to take on an irregular shape, which can lead to sleep-disordered breathing as well. Other studies have explored the link between ASD and disorders like narcolepsy and REM Behavior Disorder. However, insomnia and parasomnias remain the most common sleep disorders among adults and children with ASD.

Next let’s look at treatment options and considerations for adults and children with ASD who are experiencing a sleep disorder. (See next article: Treatment Options for ASD-related Sleep Problems)

1.7. 2/4 Treatment Options for ASD-related Sleep Problems

https://www.tuck.com/autism-spectrum-disorder-and-sleep/

Since the mid-20th century, prescription medications have been widely used to treat insomnia and other sleep disorders. The general consensus among today’s physicians is that sedative-hypnotic z-drugs, or nonbenzodiazepines, are the most effective pharmacological option for treating sleep disorders. The three most common Z-drugs — zolpidem (Ambien), zopiclone (Lunesta), and zaleplon (Sonata) — induce sleepiness without disrupting sleep architecture, unlike benzodiazepines like alprazolam (Xanax) and diazepam (Valium), which can actually worsen sleep disorder symptoms in some patients.

However, Z-drugs and other prescription medications may be problematic for people with ASD. These drugs carry high dependency risks, and may cause side effects that exacerbate ASD-related physical problems like acid reflux and constipation. Additionally, sleep-inducing drugs may interact with other medications designed to help people with ASD feel more alert and focused throughout the day. The bottom line: people with ASD should consult their physician to discuss their current medication schedule before taking any sort of sleep medication.

Children with ASD are particularly susceptible to the dependency risks and negative side effects of sleep pills, so prescription drugs should be considered a last resort for them. If parents suspect their child with ASD has a sleep disorder, then a preliminary assessment should be their first course of action. These assessments may consist of actigraphy, where the child wears a sleep monitor on their wrist that tracks sleep-wake cycles, or polysomnography (PSG), which monitors neurological and cardiovascular activities during sleep. During this assessment, parents can help physicians rule out other factors that may be affecting their child’s sleep. These factors include medical issues like tonsillitis, swollen adenoids, epilepsy, and food allergies, as well as any medications they may be taking for ASD or ADHD.

Side Effects of Common ASD Medications

It’s important to consider that many medications used to relieve ASD symptoms may be negatively impacting the sleep of those who take them. The table below lists some of the most commonly prescribed drugs used to alleviate repetitive behaviors, hyperactivity, inattention, and other symptoms of ASD, along with their sleep and non-sleep-related side effects.

Medication

Trade Name

What It Treats

Can It Cause Insomnia or Disturb Sleep?

Other Side Effects

Risperidone

Risperdal

Irritability and aggression, aberrant social behavior

Yes

Weight gain, constipation, diarrhea, nausea

Aripiprazole

Abilify

Irritability and aggression

Yes

Weight gain, nausea, upper respiratory tract infection

Clozapine

Clozaril

Irritability and aggression

Yes

Weight gain, tachycardia, constipation, enuresis, frequent nightmares

Haloperidol

Haldol

Irritability and aggression, aberrant social behavior

Yes, but rarely

Hypotension, constipation, dry mouth, muscle rigidity

Sertraline

Zoloft

Irritability and aggression

Yes

Elevated energy levels, poor concentration, diarrhea

Oxytocin

Pitocin

Aberrant social behavior

No

Elevated blood pressure, nausea, vomiting

Methylphenidate

Ritalin

Hyperactivity and inattention

Yes

Appetite suppression, dry mouth, anxiety, nausea, weight loss

Venlafaxine

Effexor

Hyperactivity and inattention

Yes

Headache, nausea, dizziness, dry mouth

Fluoxetine

Prozac

Repetitive behaviors

Yes

Headache, dry mouth

Citalopram

Celexa

Repetitive behaviors

Yes

Elevated energy levels, hyperactivity, diarrhea, dry skin

Sleep Therapy Options

If the preliminary assessment indicates the presence of a sleep disorder in a child with ASD, then treatment will likely be the next step. Cognitive behavioral therapy (CBT) has proven fairly effective in alleviating sleep disorder symptoms for young people with ASD. CBT is designed to improve sleep hygiene in patients by educating them about the science of sleep and helping them find ways to improve their nightly habits. A study published in the Journal of Pediatric Neuroscience noted that children with ASD are often set in their routines, so establishing a consistent bedtime schedule can be quite beneficial to them. A healthy bedtime schedule might consist of the following:

  • Putting on pajamas
  • Brushing teeth
  • Using the toilet
  • Washing hands
  • Getting in bed
  • Reading a book (or being read to)
  • Shutting off the light

Additional behavioral interventions may help children with ASD improve their difficulties with sleep. According to a ‘Sleep Tool Kit‘ published by the Autism Treatment Network, these interventions include the following:

  • Create a ‘visual schedule checklist’ with pictures, objects and other visual aids that can help a child with ASD grasp the concepts more easily.
  • Keep the bedtime routine concise, and limit it to roughly 30 minutes before bed. Otherwise the child might become overwhelmed with too many commitments.
  • Order the routine so that stimulating activities like television and video games come first, followed by reading and other relaxing activities.
  • Physically guide the child to the schedule at first, and use verbal cues to remind them to check the schedule. Teach them how to cross things off on the checklist themselves.
  • Provide positive reinforcement whenever the child follows the schedule correctly.
  • If the routine must be changed, let the child know in advance so that they can mentally prepare for the disruption. Alter the checklist ahead of time to reflect these changes.

In addition to CBT, light therapy (also known as phototherapy) may also help children with ASD sleep better. This form of therapy is usually conducted using a light-transmitting box kept near the child’s bed. By exposing the child to bright light early in the morning, this therapy can help adjust melatonin production and make children feel more alert throughout the day. 

Pharmacological Treatments

Therapy interventions are often effective, but some children may not respond as well to them. If this is the case, then parents may want to consider some sort of pharmacological treatment. In lieu of prescription pills, the two options below are considered the most suitable route for children with ASD — though parents should not give either of these to their child before consulting a physician:

  • Melatonin: Children with ASD often experience circadian rhythm disruption that can lead to low melatonin levels. Melatonin supplements are widely available over-the-counter, and can help boost deficient melatonin levels. They also carry a low dependency risk and few adverse side effects, though nausea, diarrhea, and dizziness may occur.
  • Dietary supplements: In addition to melatonin, other natural supplements can help induce sleepiness and improve sleep maintenance in children with ASD. These include iron, kava, valerian root, and 5-Hydroxytryptophan (5-HTP). Multivitamins may also help, as well. These supplements carry no dependency risk, and adverse side effects are minimal.

The Center for Autism and Related Disorders notes that parents should avoid giving certain over-the-counter medications to children with ASD, including sleep-inducing antihistamines like Benadryl that are often erroneously used as sleep aids.

Finally, if none of these sleep improvement strategies work, then parents may want to consider prescription medication. Rather than turning to z-drugs or benzodiazepines — which are primarily intended for adult consumption — children with ASD may respond well to these two prescription drugs.

  • Clonidine: Clonidine is an anti-hypertensive medication used to treat a wide range of conditions, including tic disorders and ADHD, both of which are commonly found in children with ASD. Clonidine also induces sleepiness, so it may be used as a sleep aid — though the drug carries a dependency risk. A 2008 study noted that Clonidine reduced sleep latency and nighttime awakening episodes in children with ASD.
  • Mirtazapine: Designed to reduce ASD-related anxiety, Mirtazapine has also been shown to alleviate insomnia symptoms in children and young adults between 4 and 24 years of age. However, antidepressants like Mirtazapine have also been linked to suicidal thoughts and behaviors in young people (adolescents in particular), so this medication may not be suitable for certain patients.

Treating Sleep Problems in Adults with ASD

Z-drugs, benzodiazepines, and other stronger prescription sleep pills may be suitable for some adults with ASD who are experiencing insomnia and other sleep disorder symptoms. However, adults are also encouraged to seek out cognitive behavioral therapy options and over-the-counter supplements like melatonin before resorting to prescription drugs. Adults with ASD should meet with their physician to discuss which treatment pathway is best for them.

For more information about sleep therapy, please visit our guides to CBT and light therapy. We also offer a comprehensive guide to z-drugs, benzodiazepines, and other commonly prescribed sleep medications for adults.

1.8. 3/4 Sleep Management Tips for People with ASD

https://www.tuck.com/autism-spectrum-disorder-and-sleep/

Therapy and prescription medication can be an effective way to reduce problems associated with sleep disorders and disturbances. However, people with ASD may also experience improvements by simply establishing a healthy night-time routine and improving their sleep hygiene.

Tips for Adults

Strategies adults can use to minimize sleep issues and get a good night’s sleep on a regular basis include:

  • Create a relaxing bedroom environment that is conducive to sleep. Beds should only be used for sleep and sex, so refrain from activities like eating, watching television, and reading in bed; confining these activities to other areas of the house will help establish a more sleep-friendly atmosphere in the bedroom.
  • Eat balanced dinners and snacks prior to bedtime, and avoid substances like alcohol, nicotine, caffeine, and sugar as much as possible.
  • Electronic devices like TVs, computers, tablets, and smartphones emit ‘blue light’ that can hinder melatonin production and increase sleep latency. Recent studies suggest that people should avoid all electronics for at least one hour before bedtime.
  • Avoid napping for more than thirty minutes during the day, and less than three hours before bedtime.
  • Fluorescent and LED lights also emit blue light, as well as ‘artificial light’, which can also cut down on melatonin production. Outside lights may affect sleep onset and maintenance, as well. For optimal bedroom conditions, consider installing adjustable lights that can be dimmed; this will help boost melatonin production. Also make sure the curtains are drawn in order to block outside lights, as well as daylight when morning arrives.
  • Make sure the bedroom is temperature-controlled, and that the thermostat is set to a comfortable level. Don’t be afraid to adjust the temperature to correspond with seasonal changes.
  • If nightly discomfort is an issue, then it might be time to replace the mattress. Most mattresses need to be tossed out after seven years of consistent use. Sleep position may also be a factor, since people who sleep on their sides and backs tend to be more comfortable on mattresses made of memory foam or latex, which are designed to conform to the contours of the human body and provide spinal support. Innerspring mattresses, by comparison, offer little spinal support or contouring, and are less suitable for most side- and back-sleepers.
  • Keep a sleep diary. This will help track nightly patterns and changes, and can be a useful reference for physicians. Sleep diaries are often required as part of cognitive behaviour therapy (CBT) and light therapy.

Tips for Children and Parents

Parents of children who have been diagnosed with ASD and are experiencing sleep problems can also use the strategies listed above to help their children r get enough rest each night. The established bedtime routine schedule discussed in the previous section can also be useful. Additionally, here are a few more tips for parents of sleep-deprived children with ASD.

  • Many foods naturally induce sleep, and parents can include these in nightly meals and snacks to help their children rest better. These include nuts, leafy greens, dairy products, and other products that are rich in calcium and magnesium. Tryptophan can also induce sleepiness; this amino acid is found in turkey, chicken, bananas, and beans. For children with low melatonin production, try fruits like sour cherries, grapes, and pineapple that contain high levels of natural melatonin.
  • Daytime exercise can help children feel more naturally tired at night, while physical exertion too close to bedtime can actually hinder sleep. Encourage children with ASD to get exercise during the day, but try to curtail these activities in the hours leading up to bed.
  • Relaxation techniques often do wonders for children with ASD who are experiencing sleep troubles. These include meditation, listening to soft music, reading, or simply laying in bed with the lights off. Parents can also participate in these activities to guide the child along and make sure the techniques are working effectively.
  • Sensory distractions are a major issue for children with ASD at all times of the day, particularly at night. To help them sleep better, test the floor and door hinges for creaking sounds. Other sensory considerations include outside light, room temperature, and bed size.
  • If the child follows an established bedtime schedule, be sure to check on them during the early stages to ensure they are actually asleep when they are supposed to be. If they are awake and seem distressed or upset about not being able to fall asleep, take a minute to reassure them that everything is all right. Many children with ASD respond well to physical touching, so also try patting them on the head, rubbing their shoulders, or giving them a high-five to help ease their worries.
1.9. 4/4 Additional Sleep Resources

https://www.tuck.com/autism-spectrum-disorder-and-sleep/

For more information about the relationship between ASD and sleep difficulties, please visit the following online resources.

ASD in Adults

  • Interactive Autism Network: The IAN offers a user-friendly online platform for adults with ASD to communicate and share ideas with one another.
  • Autism Speaks: Adults with ASD can access dozens of blogs, journals, advocacy groups, and other online resources with this comprehensive link list from Autism Speaks.
  • Actually Autistic Blogs List: This exhaustive list includes hundreds of links to blogs created and maintained by adults who have been diagnosed with ASD.
  • Journal of Autism and Developmental Disorders: This 2015 report outlines the RBQ-2A, one of the first screening questionnaires designed to evaluate adults for ASD symptoms and behaviors.
  • Scientific American: This 2016 article titled ‘Autism — It’s Different in Girls’ looks at some fundamental differences in the way ASD is addressed in male and female patients.

ASD in Children

  • National Autism Association: Early detection of ASD is crucial for developing children, and this NTA guide geared toward parents includes common symptoms, tendencies, and information about screening procedures.
  • Pharmacy and Therapeutics: This 2015 study includes up-to-date information about the different prescription and over-the-counter pharmacological treatment methods for children with ASD.
  • HelpGuide.org: This detailed guide is designed to help parents understand the signs and symptoms, behaviors, effects, and treatment options for ASD in children.
  • Scientific American: This article titled ‘The Hidden Potential of Autistic Kids’ looks at certain tendencies — such as strong memories and technological proficiency — that are associated with high-functioning ASD in children.
  • Parents: Writer David Royko penned this heartfelt article (titled ‘What It’s Really Like to Raise a Child with Autism’) about his own experiences with his son Ben.

ASD and Sleep in Adults

  • Research Autism: This guide titled ‘Sleep Problems and Autism’ covers common complaints, risk factors, treatment options, and other information related to people with ASD who are experiencing sleep issues.
  • Musings of an Aspie: In a 2012 post titled ‘Wide Awake: Insomnia, Autism and Me’, the author of this long-running blog — a woman in her 40’s previously diagnosed with Asperger syndrome — details her struggles with sleep, as well as some effective solutions she has discovered.
  • Sleep: This 2015 journal article discusses common sleep patterns and problems in adults with high-functioning ASD, including more sleep disturbances at night and lower sleep efficiency than people who do not have ASD.
  • Sleep Intervention for Adults with Autism Spectrum Condition: Published by a team of researchers at the London-based Royal College of Nursing, this paper outlines the effectiveness in group therapy treatment for adults with ASD.

ASD and Sleep in Children

  • WebMD: This guide to helping children with ASD get a good night’s sleep includes causes and side effects of common sleep disorders, as well as some treatment options and sleep hygiene improvement tips.
  • Spectrum: In this comprehensive 2015 report, writer Ingfei Chen explores the medical, psychological, and environmental factors that can cause sleep problems in children with ASD.
  • Autism Treatment Network: Learn about some best-practice behavioral interventions for children with ASD and sleep problems with this useful tool kit from the ATN.
  • Journal of Pediatric Neuroscience: This 2015 report reviews key 20-year findings related to the assessment, diagnosis, and treatment of children with ASD who are experiencing sleep problems.
  • Sleep and Autism Spectrum Disorders: This report published for the 2011 National Autism Conference highlights causes, symptoms, and treatment methods for the most common sleep disorders in children with ASD.