Autism and Scouting: A Practical Guide to Understanding and Supporting Individuals on the Autism Spectrum

1. Autism and ScoutingAccept,Enrich,Inspire, Empower™ A Practical Guide to Helping Leaders Understand and Support Individuals on the Autism Spectrum and with other co-existing conditions – Beyond The Basics Presented by Autism Empowerment

2. Autism and Scouting Accept,Enrich,Inspire, Empower Autism Empowerment is a 501(c)3 non-profit public charity founded in 2011. This is the third year we have been offering autism training and this training is being offered in presentations around the country.

3. Autism and Scouting Accept,Enrich,Inspire, Empower What do you want out of this class?

4. Autism and Scouting Accept,Enrich,Inspire, Empower Table of Contents Understanding Autism Spectrum Disorder (ASD) Sensory Processing Challenges Sensory Challenges vs. Behavioral Issues Conflict Resolution Self-Regulation / Overstimulation Getting into each Scout’s world Making your unit more Sensory-Friendly Support around Advancement Support beyond and after today

5. Autism and Scouting Accept,Enrich,Inspire, Empower “The wonderful thing about such boys is their cheerfulness and their eagerness to do as much in scouting as they possibly can. They do not want more special tests and treatment than is absolutely necessary.” Robert Baden-Powell

6. Autism and Scouting Accept,Enrich,Inspire, Empower Current Prevalence Rate Autism in the US is 1 in 88 * (this includes Asperger Syndrome, PDD-NOS and all ASDs) Autism among boys is 1 in 54 (1 in 252 for girls)* For individuals with Autism, it is 1 in 1 Autism Empowerment serves the 1 in 1 Scout Leaders should serve the 1 in 1 * Rates are based from 2008 CDC Rates

7. Autism and Scouting Accept,Enrich,Inspire, Empower What is Autism vs. Asperger syndrome (AS) vs. Autism Spectrum Disorder (ASD)? Autism is defined as a Neurological Disorder and a complex developmental disability that affects each person differently and to varying degrees of severity. It is a Spectrum Disorder. “If you have met one person with autism, you have met one person with autism.“ Common saying in the autism community Important take-away:Although there are many on the autism spectrum who show similar characteristics, no two people on the autism spectrum are the same.

8. Autism and Scouting Accept,Enrich,Inspire, Empower Autism within the Medical Community • Clinicians diagnose Autism Spectrum Disorder (ASD) through the use of the Diagnostic and Statistical Manual of Mental Disorders (DSM). The most recent edition, DSM-5 was released in May 2013 despite controversy and confusion within the autism and Asperger communities. The previous edition was released in 1994 and introduced Asperger syndrome in the DSM for the first time. • The DSM-5 combines 4 independent diagnoses - autistic disorder, Asperger syndrome, Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) and childhood disintegrative disorder into an umbrella diagnosis, “Autism Spectrum Disorder.” • Although most individuals diagnosed under DSM-IV are grandfathered into the DSM-V ASD diagnosis, for purposes of funding and providing services, many agencies still refer to the DSM-IV. • Although a diagnostic label may change, the need for support still exists.

9. Autism and Scouting Accept,Enrich,Inspire, Empower Understanding ASD - Practical Discussion • Autism is a spectrum disorder and brain difference that includes a broad range of symptoms. For purposes of this presentation, we use “autism” or “ASD” to represent all ranges of the spectrum, including Asperger syndrome. • With autism, it is possible to be verbal or non-verbal. Individuals with ASD may be intelligent or have intellectual impairments.

10. Autism and Scouting Accept,Enrich,Inspire, Empower Other characteristics of ASD may include: • Difficulty navigating social interactions, reading social cues and communicating wants, needs and emotions effectively.   • Individuals may have unusual sensory perceptions and seemingly odd behavior that others may not initially understand. (i.e. self-regulatory stimming, perseverating). • Individuals may be more or less sensitive to the ordinary sights, sounds, smells, tastes and touches of everyday life. • Difficulty with short-term memory, staying organized and remaining on task. • Hyperfocus and /or perseveration on highly selective interests. • Difficulty with gross motor and /or fine motor skills. Individuals with ASD need extra understanding and families need extra support. There are various treatments and interventions for ASD symptoms and co-conditions, however it is not “one-size-fits-all”. There is no “cure” for autism. There is no universal “cause”. Treat each person as an individual.

11. Autism and Scouting Accept,Enrich,Inspire, Empower Language and Tone / People First • Individuals with autism are people first. Don’t define them by a diagnostic label. • Many adults and teenagers in the autism and Asperger community consider autism and Asperger’s to be cultural and may use words like Autistic, Aspie and Asperkid to refer to themselves in an affectionate and positive way. • “People First” language manuals often imply these words to be disrespectful to those on the autism spectrum, despite many adult Autistics publishing essays to the contrary. • Individual with autism, person with Asperger’s is often seen and heard as well. When in doubt, ask someone how they prefer to address their association with autism. • Real “people first” is more about respect, acceptance and positive tone than semantics. • It is not your place to correct individuals regarding how they would like to self-identify. • See “Autism Does Not Define Me” poem by Karen Krejcha.

12. Autism and Scouting Accept,Enrich,Inspire, Empower Co-conditions • Many of the individuals you work with will have co-conditions also. • Many times the co-condition is diagnosed first . • Here are just a few of the possible co-conditions: • ADD / ADHD - Attention deficit hyperactivity disorder • Anxiety, Bipolar Disorder, Depression and other mental health issues • Dyslexia and other learning differences • Epilepsy / Seizures • Eating Disorders – Anorexia, Binge Eating, Bulimia • OCD - Obsessive–compulsive disorder • SPD - Sensory processing disorder • Tourette Syndrome • Visit the website www.autismempowerment.org for more complete information

13. Autism and Scouting Accept,Enrich,Inspire, Empower Sensory Processing Challenges What is a Sensory Challenge? Sensory Challenge vs. Behavioral Issue Self-Regulation / Overstimulation

14. Autism and Scouting Accept,Enrich,Inspire, Empower Sensory Processing (Sensory Integration) There are neurological issues causing difficulties with taking in, processing and responding to sensory information about the environment and from within the own body in a variety of areas.

15. Autism and Scouting Accept,Enrich,Inspire, Empower Types of Sensory Processing Issues Gustatory (Taste) Tactile (Touch) Auditory (Sounds) Olfactory (Smell) Visual (Sight) Vestibular (Body Motion/Dexterity) Overstimulation

16. Autism and Scouting Accept,Enrich,Inspire, Empower Understanding Sensory Challenges • What to look for as far as possible sensory challenges? Each child will be different. • Learn how you can assist each child and family with any self regulation issues. Each child will need some type of self regulation. • Learn how this information will help you better connect with the child and enhance the scouting journey.

17. Autism and Scouting Accept,Enrich,Inspire, Empower Behavioral Issue vs. Sensory Challenge Is it sensory? Is it behavior?

18. Autism and Scouting Accept,Enrich,Inspire, Empower Behavioral Issue vs. Sensory Challenge Temper Tantrum vs. Meltdown • Both may seem to look the similar, ie: acting out, meltdown, shutdown, yelling or doing an action that is perceived as a problem issue • A meltdown is an emotional response from a sensory challenge or need not being met. Assess the source of meltdown.

19. Autism and Scouting Accept,Enrich,Inspire, Empower What is the Difference? Tantrum – Is a manipulation fit (crying, screaming, throwing themselves on the floor, etc..) with the aim of the person getting what they want from you. They are looking for a response. Meltdown – Is an emotional response (crying, screaming, throwing themselves on the floor, etc..)to what the person is not getting or to the person being overstimulated by external sources. They don’t care about social responses from others at the time. Shutdown – Is an emotional response (retreating, closing oneself off, not responding etc…) to what the person is not getting or to person being overstimulated by external sources. They don’t care about social responses from others at the time.

20. Autism and Scouting Accept,Enrich,Inspire, Empower Be a Brain Detective

21. Autism and Scouting Accept,Enrich,Inspire, Empower

22. Autism and Scouting Accept,Enrich,Inspire, Empower Behavioral Issue vs. Sensory Challenge • Adults should be aware that there is a difference between what is a behavioral challenge and what is a sensory issue. • A behavioral challenge and sensory issue may look similar, but they are different and should be addressed with different strategies. • Refer to meltdown/tantrum/shutdown handout. • Treat the sensory challenge first then after you have more of a teachable moment, address the behavioral part.

23. Autism and Scouting Accept,Enrich,Inspire, Empower Behavioral Issue vs. Sensory Challenge • If you treat the sensory challenge as being naughty, the negative actions may continue and will often get worse. • If you treat the sensory challenge first, there is a high chance the “behavioral issue” will be taken away from the equation and the child will be more regulated. Communication with the child should improve. This also builds trust and shows them that you are coming into their world. • Inappropriate behavior during a meltdown or sensory challenge should be addressed at a later time after a cool down.

24. Autism and Scouting Accept,Enrich,Inspire, Empower Behavioral Issue vs. Sensory Challenge How you handle a situation can Determine

25. Autism and Scouting Accept,Enrich,Inspire, Empower Conflict Resolution - Redirection • Be aware of warning signs: sensory triggers, fidgety behavior, tired, hungry, changes in routine, lack of focus. When redirection is necessary: • Do so in a calm voice unless safety is a risk. • Try to redirect privately. Never publicly humiliate or taunt. Consider a private, non-verbal signal. • Desensitize the environment. • Redirect to a calming activity, bring to a sensory break area or get the scout engaged in something else.

26. Autism and Scouting Accept,Enrich,Inspire, Empower Conflict Resolution Reminders • Keep your cool! • It is hard but in the middle of a meltdown / tantrum, this is not the time to teach. Remove a youth if he or she is posing a safety risk to themselves or others. When it is a teachable moment: • Support, give positive feedback and clear limits. • SHOW correct behavior. (Visually and/or through Role Play) • Offer feedback and redirection in a respectful way that allows the scout to not to be embarrassed and save face. • Try to mirror what is being done in their IEP or 504 plan if they have one. It will help them have a consistent approach in more aspects of their life.

27. Autism and Scouting Accept,Enrich,Inspire, Empower After a Conflict or Situation • Sit down with the youth and/or family to assess the situation (in a non-threatening atmosphere) . • Try to determine what the trigger for the situation was (root cause). • Try to identify something positive from the situation. Look at this as a growth opportunity. • Think of ways to change the outcome in the future. • Having a plan and being prepared is a good thing! However, if the youth gets into the fight or flight mode, the plan may not work. Try not to get to that point. • Use a Social Story if needed to reinforce the plan.

28. Autism and Scouting Accept,Enrich,Inspire, Empower What is Self Regulation? • It is a person’s ability to control his or her behavior and emotions. It develops over time and it involves many aspects of social, emotional and cognitive development. • Some examples of self regulation with ASD are flapping, spinning, crashing, humming, swaying, tapping a pencil, etc. • Self Regulation happens with every person. It could be drinking coffee, diet soda, chewing gum, eating chocolate, twirling hair or doing that one thing that just makes you feel grounded, stable and secure.

29. Autism and Scouting Accept,Enrich,Inspire, Empower Self Regulation – Assistance for the Youth • The youth shouldn’t be made to feel what he is doing is wrong unless it is for health or safety reasons. (Redirection okay.) • With the permission of the scout’s family, stimming education for other scouts & families can be done within the unit. • Any bullying or harrassment should be stopped and the instigator(s) should be given counsel on what it means to be a scout. • A private area can be set up for the scout to have a sensory break. Short walks are often effective. • A pack Disability Awareness Class or doing the Troop Disabilities Awareness Merit Badge should be considered at the beginning of each scouting year.

30. Autism and Scouting Accept,Enrich,Inspire, Empower Overstimulation Challenges Overstimulation happens when one or more of the senses are strained and it becomes difficult to focus on the task at hand. It is a sensory overload. How to assist scouts with these challenges • Allow for quiet time andSensory Breaks. • If possible have a quiet, non-cluttered area set aside for breaks. • Allow for a 5 or 10 minute walk with supervision. • When camping, bring an extra tent for a sensory break area. • Allow for extra processing time. Give extra time forrespose. • Be aware of sensory triggers and try to avoid them.

31. Autism and Scouting Accept,Enrich,Inspire, Empower Getting into each scout’s world • By getting into each scout’s world, you can unlock connections within their world. This will enrich communication with the youth. He or she will get more out of scouting and the scouting program. • By getting into each scout’s world, you can find examples of how they learn best. Many (not all) on the autism spectrum are visual learners. • Showing them how to do something is often more effective than verbal or written instruction only.

32. Autism and Scouting Accept,Enrich,Inspire, Empower Getting into the scout’s world via Special Interests • First step is to find the scout’s special interests and or hobbies. • Don’t pretend - Don’t be a Poser • Use those to help engage the scout • Use positive encouragement and special interest incentives for participation (bead necklace etc..) • Listen to “Tapping into a Scouts Special Interests – Jennifer Cook O’Toole” on Autism and Scouting Radio http://www.blogtalkradio.com/autismandscoutingradio/2012/11/01/tapping-into-a-scouts-special-interests

33. Autism and Scouting Accept,Enrich,Inspire, Empower Try to integrate the scout’s special interests into den or troop activities. • Cars - Family Travel Belt Loop, Automotive Merit Badge, attend a car show. • Computers – Computer Belt Loop, Communications Activity Badge, Computers, GeoCaching, Robotics Merit Badge, tour at a computer company. STEM programs (Science, Technology, Engineering and Math) • Dinosaurs – Wildlife Conservation or Geology Belt Loop, Geologist Activity Badge, Geology Merit Badge, tour at a Museum or hike at someplace like the caves. • Bridges – Science Belt Loop, Engineer or Scientist Activity Badge, Engineering or Architecture Merit Badge. • For all Subjects – Art Belt loop, Communicating Belt Loop, Reading and Writing Belt Loop, Artist or Showman Activity, Reading or Theater Merit Badges

34. Autism and Scouting Accept,Enrich,Inspire, Empower How to make your unit more Sensory Friendly It Starts with Leadership Changing the way things are done

35. Autism and Scouting Accept,Enrich,Inspire, Empower Sensory Friendly ? What does Sensory Friendly unit mean? • Means that the unit is aware that sensory issues affect everybody, both youth and adults. Scouts do not need to be on the autism spectrum or have Sensory Processing Disorder to have sensory issues. All scouts can benefit! • Means that leaders are sensitive and willing to provide support and implement best practices to prevent overstimulation of the scout’s senses. • Means leaders and unit volunteers will Be Prepared for issues that arise when a scout needs a sensory break. • Means the leadership knows what a sensory break area is and is committed to providing one.

36. Autism and Scouting Accept,Enrich,Inspire, Empower Making your unit more Sensory Friendly It Starts with Leadership Have Leaders willing to receive initial training. Access online training and ongoing training through Autism and Scouting Radio and Blog as well as the Autism Empowerment Website / Radio Station / Blog – www.AutismEmpowerment.org Leaders follow and live the Scout Oath and Law. Accept scouts for who they are, where they are. Enrich their lives by teaching them lifelong skills. Inspirethem to be Exceptional. Chances are that they’ll inspire you too. Empower them by giving the tools to be self-sufficient and successful.

37. Autism and Scouting Accept,Enrich,Inspire, Empower Making your unit more Sensory Friendly Get to know the scout and the scout’s family first! • After the unit first learns that you have a youth on the autism spectrum, set aside private time to get to know that youth and his family. • Have a meeting with parents (separately at first) and then later bring in the youth. • Get information about strengths, sensory challenges, learning style, triggers, school history, medical history and anything that will allow you to assist the scout. • See the Individual Scout Profile (ISP) to assist you will all scouts. • Find out the goals for the youth. Is it to make friends, camping, hiking, etc…

38. Autism and Scouting Accept,Enrich,Inspire, Empower Simple ways to make your unit more sensory friendly Choose a meeting place without fluorescent lighting or bad acoustics (if possible). It is understood that many times unit meetings take place in school or church gyms and it might not be possible to have the ideal setting. Sensory Room – Set up a room where a scout can go to have a sensory break. Always remember the guide to safe scouting and two deep leadership. It is ideal if this room is free of distractions and where lights can be dimmed. Sensory Tent – On campouts, this is where scouts can have a place to take a break. Sensory Supply Box – Have your unit purchase a bin, noise reducing headphones, small fidgets, some sun reducing glasses, a small nose mask and/or nose plugs. Optional items could be a bean bag chair, tablet, books, a big pillow, weighted blanket, mp3 player with headphones, sensory disc or sensory seat.

39. Autism and Scouting Accept,Enrich,Inspire, Empower Examples of Sensory Bin Contents

40. Autism and Scouting Accept,Enrich,Inspire, Empower Simple ways to change your unit – Visuals • Visual Timer Clocks – In Den meetings, use them to show changes between different activities. In Pack/Troop Meetings they can be used in the front of the room to show when changes will be made. (Time Timer Clock brand.) • Visual Schedules – Having a visual picture schedule will help all Scouts keep focused and know the expected sequence of events. (see handout) • Visual Calendars – Helps put the abstract concept of time into a concrete form. • Visual Tools & Rewards – Many on the autism spectrum are visual learners. Having visual tools and rewards can provide you another level of teaching. Again, many will benefit from this type of learning. • Organizational Checklists – Checklists help individuals with executive functioning challenges with task organization, focus and completion.

41. Autism and Scouting Accept,Enrich,Inspire, Empower Advancement Cub Scouts Boy Scouts / Venturing / Sea Scouts

42. Autism and Scouting Accept,Enrich,Inspire, Empower Cub Scouts BSA Policy in advancement manual states 10.2.1.0 “Do your Best” – Advancement performance in Cub Scouting is centered on its motto “Do your best”. When a boy has done this … his very best… then regardless of the requirements for any rank or award, it is enough; accomplishment is noted.

43. Autism and Scouting Accept,Enrich,Inspire, Empower Boy Scouts / Venturing / Sea Scouts Advancement Policy Modifications/Accommodations vs. Alternative ISAP (Individual Scout Advancement Plan) Beyond Age of Eligibility

44. Autism and Scouting Accept,Enrich,Inspire, Empower Advancement Policy for working with scouts with disabilities Policy for advancement for those with disabilities can be found on page 74 of the “Guide for Advancement”. Section 10 starts: “Youth with physical disabilities and youth and adults with developmental or cognitive challenges are welcome in the Boy Scouts of America. As outlined in this section, various accommodations exist to facilitate advancement.”

45. Autism and Scouting Accept,Enrich,Inspire, Empower Advancement Policy for working with scouts with disabilities 10.2.2.0 – Advancement for Boy Scouts and Varsity Scouts with Disabilities. “ Members must meet current advancement requirements as written for merit badges, all ranks and Eagle Palms, although some allowable substitutions or alternatives are specifically set forth in official literature. The member is expected to meet the requirements… no more and no less…and he is to do exactly what is stated. “and “Requests for alternate requirements for Tenderfoot, Second Class and First Class ranks can be made using the information outlined below”. This is done in 10.2.2.1 - 10.2.24.

46. Autism and Scouting Accept,Enrich,Inspire, Empower Alternative Requirements vs. Accommodations / Modifications An Alternative Requirement is when you are requesting a change in advancement and go through the process outlined in 10.2.2.0– 10.2.2.2

47. Autism and Scouting Accept,Enrich,Inspire, Empower Guidelines for Alternative Requirements • All or as many as possible rank requirements need to take place. • A request needs to be filed with the Advancement Committee. In many areas the Council Special Needs Committee may help assist. You will need documentation including a written request and a qualified medical professional report. • Provide a scout’s IEP (Individualized Education Plan) or any other documentation that will support the need for a change in requirements. • Provide an ISAP (Individual Scout Advancement Plan) from the Working with Scouts with disAbilities website. www.wwswd.org This will help the committee to see what kind of change is requested. • Advancement Committee reviews the request. • In some cases the Committee may request to interview the scout and parents. 7. The Committee will make a decision and then let the scout and leadership know if the Alternate Requirement has been approved or denied.

48. Autism and Scouting Accept,Enrich,Inspire, Empower Modifications (Accommodations) A modification (accommodation) is the act of adding an aid or support in order to complete the task or requirement. Modifications are allowable under BSA Policy without prior approval outside the unit.

49. Autism and Scouting Accept,Enrich,Inspire, Empower 10.2.2.1 -”Simple modifications very close to existing requirements need NOT be approved.” … “A Scout in a wheelchair for example, may meet the requirement for hiking by “wheeling” to a place of interest. Allowing more time and permitting special aids are also ways leaders can help scouts with disabilities make progress. Modifications, however, must provide a very similar challenge and learning experience. “

50. Autism and Scouting Accept,Enrich,Inspire, Empower Examples of Modifications / Accommodations First Class - 9b. Successfully complete the BSA swimmer test. Have the scout use a kickboard or swim noodle. Story from Scoutmaster Karen Mansfield (on Autism & Scouting Radio) First Class - 8c. Show how to transport by yourself, and with one other person. Simulating how to help a person from a smoke-filled room and a person with a sprained ankle is the intent of requirement. If the scout does not like physical contact with other individuals, then this could be something that stops the scout. The requirement does not say demonstrate. How else could they show it? Drawing