November 30, 2016

Navigating the Holiday Season: Tips for Parents and Caregivers


WV ATC's Dr. Catherine Goffreda Bailey provides the following tips and recommendations:

Although the holiday season can be a time of joyful memories, comforting traditions, and family reconnection, the inevitable stressors of the season sometimes overshadow these positives. Individuals with Autism Spectrum Disorder (ASD) are especially susceptible to becoming overstimulated by the sensory overload and increased social engagements of the season. Providing early cues of what to expect and practicing moderation are key to enjoying a low-stress holiday season. With mindful planning and understanding of the individual’s needs, the holidays can be significantly more relaxed and enjoyable for everyone.

General Holiday Considerations

§  Family Routines – To greatest extent possible, maintaining a consistent, predictable schedule throughout the holiday season and school breaks will help to minimize disruptions to the familiar routine.

§  Sensory Needs – Parents and caregivers often know the individual’s sensory needs and triggers best. Be mindful that the individual’s tolerance for sensory intake may remain unchanged during the holiday season. For example, blinking lights, musical decorations, or strong-smelling candles could be highly aversive (or even physically painful) to some individuals.

§  Involving Siblings – When developmentally appropriate, siblings could benefit from a relaxed, positive conversation about the individual’s unique sensory, social, and communication needs. It also may be helpful to discuss the family’s strategies for supporting the individual during potentially stressful activities.

§  Holiday Shopping – Crowded, noisy stores in the weeks before the holidays are overstimulating for everyone, especially individuals with ASD. Making a list of items in advance can help to keep trips as brief and organized as possible.

§  Giving Back – The holiday season is an impeccable time for teaching kindness and goodwill. Encourage the individual to help with donating toys, making meals for others, or volunteering for a charitable organization as a family.

Preparing for Special Events

§  Social Stories – Reading a social story together before new events or family gatherings can help the individual know what to expect. If possible, include photos of the people and places he or she will be visiting. The individual may enjoy helping you draw a picture of the event. (Note: See below for examples of holiday social stories).

§  Holiday Calendar – Posting a family calendar of holiday activities in a visible location may also be helpful. The calendar could simply list general events, or be very specific regarding holiday activities (e.g., putting up decorations, shopping for gifts, family movie night, etc.)

§  Fine Motor Skills – Individuals with fine motor skill difficulties could benefit from practicing unwrapping gifts with small, fun items in a “game” format in advance. Consider using colored bubble wrap as a sensory-friendly alternative to wrapping paper.

§  Practice Social Behaviors – Some individuals may benefit from role-playing holiday social behaviors, such as greeting family members or reacting to unwanted gifts. However, recognize that physical affection (e.g., hugging and kissing relatives) should be at the individual’s comfort level and discretion. Explaining this to family members in advance may help alleviate potentially awkward situations or hurt feelings.

During Holiday Events

§  Safe Space – Identifying a quiet room or location in advance during the event for the individual to decompress may be helpful. Packing a small bag some of his or her favorite items can further help to foster comfort with the location.

§  Predictability – Let the individual know in advance where you are going, who will be there, what activities will take place, and when you will arrive and leave.

§  Be Proactive – Recognizing your child’s early signs of anxiety can help to intervene early, before a potential challenge occur. Utilize positive behavior support strategies to the individual adjust to changes.

Ultimately, many parents and caregivers pressure themselves to make every aspect of the holiday season unrealistically perfect. Sometimes the most memorable events serendipitously occur when things don’t go quite as planned. Don’t be afraid to scale back, or even start a new family tradition to replace one that no longer fits your family’s needs. Finally, taking the time to restore your own energy levels and peace of mind during the holiday season ultimately benefits everyone. Wishing you a joyful, memorable holiday season from the West Virginia Autism Training Center!

Free Printable Holiday Social Stories:


Thanksgiving #2:


Visiting Family at Christmas:


Visiting Family at Christmas (Adolescents/Adults):


What to Expect at Christmas:


Hanukkah:


Going to Visit Santa:


Receiving Presents:



October 03, 2016

Happy Halloween!


Halloween is just around the corner. WV ATC's Erin Lash submits the following tips for making the holiday a little more fun for all:

  • Create a visual story of what Halloween may be like for your child, with some pictures or drawings. This will help your child prepare for the day’s activities;
  • Try on costumes before Halloween. If the costume is uncomfortable or doesn’t fit right, it may cause unnecessary distress and ruin their fun;
  • If your child does not like his or her costume, don’t make them wear it. Instead, talk about the situation with your child and try to uncover the reason why they don’t like it. After you talk with your child, they may gradually get used to the costume. Have them wear it for short periods of time and at increasing intervals over time.;
  • Consider a Halloween costume that fits over your child’s regular clothes, such as butterfly wings or capes;
  • Before the big day, practice going to a neighbor’s door, ringing the bell or knocking on the door and receiving candy.
Some Halloween participants like to hand out a card, similar to the one below, to help with saying "Trick or Treat!"


Above all else, enjoy yourself! That's what this holiday is all about!



August 01, 2016

Back To School Tips


WV ATC's Tina Hatfield, a former educator once named Teacher of the Year in her county, provides these back to school tips for teachers and for parents.

Back to School Tips for Teachers

1.    Accommodate the visual learning styles of students with autism. Providing visuals of notes, or other material the student is expected to learn, may improve academic, social, and behavior expectations.

2.    Role playing how to “think it-don’t say it” with a child may help him or her recognize when and how to speak aloud during class.  

3.    Please be very considerate before instructing a student with autism to maintain eye contact with you. Not making eye contact isn’t a sign of poor attention or disrespect. Many students describe eye contact as “painful,” or “uncomfortable.” Their feelings should be respected.

4.    Communicate with the family to learn about your student. Ask what things may trigger a meltdown, what the student likes and dislikes, what he or she is good at. Use a peer buddy for note taking.

5.    Plan for a “safe space” for whenever things get overwhelming. Providing a quite area or another room the student can go to if he or she needs to calm down may help prevent difficulties.

6.    Compliment and provide positive reinforcement even during brief, simple interactions.

7.    Develop a structured class routine. Prepare the student in advance if something in a typical routine must change.

8.    Be considerate of sensory issues. Some smells, sounds, lighting situations, etc. can cause a sensory overload. Be sure to offer self-soothing techniques that the student can use.

9.     Remain calm and patient. We are all in this together and the more support the student has, the more success he or she will have.


Back to School Tips for Parents 

1.    Start getting your child back into the school routine as early as possible. 

2.    Visit the school before school starts so you and the child can meet the teacher and get acclimated to the new classroom.  This may also give you time to talk with a new teacher about effective strategies.  

3.    Understand that not all challenges are related to autism. Your child is still a child. He or she may be acting like any child of that age.  

4.    Believe in yourself as much as you believe in your child. No one knows your child better than you know your child. 

5.    Discuss the unexpected. You can’t know everything that will happen during the school day but using strategies like Social Stories may help familiarize your child with routines, and provide tips for when the unexpected occurs.   

6.    Teach and review school related “hidden curriculum.” Go over the “dos and don’ts” of school expectations.  

7.    Establish communication early with all staff that will be interacting with your child. This is to help prepare you as well as your child for the upcoming year. 

8.    Smile! Your child loves you!




June 17, 2016

Basics Of Supporting Challenging Behavior


Parents of children on the spectrum know all too well the challenge of dealing with behavior difficulties, as well as the judgement they may receive from others during the most difficult times. Understanding “how behavior works” is not as intuitive as many may think, especially when you compound the issues inherent to people with an ASD and the assumption by many that it’s the autism causing the behavior. So what is there to do but whatever it takes to make it stop?
Turns out there is a lot that can be done!   But if you focus just on stopping challenging behavior in the moment, there is a good chance you are in fact helping that behavior to continue. We call this reinforcing it: scream for the candy, get the candy (screaming stops) but next time I will scream when I want the candy, or anything else for that matter! And while this simple example illustrates an important concept, when the person on the spectrum is having difficulties and you don’t know why, or you need them to accept a situation (doctor exam for example?), it’s neither simple nor easy for anyone.

But understanding the root cause is an important first step and this is usually called the “function” of the behavior. And while it can get more complicated when it comes to building the skills necessary to replace the problem behavior, finding the function or purpose usually takes just a little bit of problem solving and can be narrowed down to a few basic wants or needs.
Broadly speaking, you can even break it down do just two needs? Do they want to GET something or do they wish to AVOID something? And then those ‘somethings’ can be divided into just three basic categories: Attention, Tangible, and Sensory. Let’s look at these three concepts individually.

Attention: Most everyone wants positive attention at least once in a while, especially from those they love. But somehow when a person does it ‘just for attention’ we view that negatively and something that should be dismissed. If a child is seeking attention through challenging behaviors it doesn’t discount the very real and legitimate need on their part. With communication and social skill deficits a major part of the very definition of ASD it is no surprise that many wind up turning to inappropriate actions that are in fact very effective at getting attention, even if it is negative!  And again, the social challenges also mean that they may wish to avoid attention.  Hitting and screaming or yelling insults is often the quickest way to turn others away or get sent to your room!
Tangibles: These are items, experiences or activities. They want to play video games or they don’t want to take out the trash. They want to stop at McDonald’s, they don’t want the peas on their plate. This one is often easy to spot but no less frustrating to deal with.

Sensory: These are often particularly difficult to understand because people with ASD have unusual responses to sensory stimuli – what they see, hear, taste, smell, and feel as well as how they experience movement and gravity. And they are key to being able to regulate our emotions as well. And when a sensory need is denied it triggers us to go into the infamous ‘fight or flight’ mode, which often means a challenging behavior is inevitable. Knowing your child’s sensory ‘profile’ and finding ways to prevent or compensate for triggers is often the best way to approach behaviors based on escaping sensory challenges and then also teaching more appropriate and less intrusive methods for accessing sensory needs. If your child has on occupational therapist, they can be a great help in understanding their specific needs.
Once you have figured out the function of the child’s behavior you then have to figure out if there is a better way for them to meet their needs. Functional communication training for non-verbal individuals is a critical step in changing behaviors and reducing frustration. Perhaps it is more a matter of teaching specific social skills or building awareness of typical sensory challenges so that they can more successfully navigate their world.

Remember that ASD’s (and other disabilities) are never the cause of challenging behaviors. What they do cause are skill deficits! And the lack of skill is what leads to behaviors of concern. And it is much more effective and rewarding for all if skill development is the focus rather than punishing or extinguishing behavior.
 Remember if you just focus on finding that magic consequence to change behavior you are likely just setting everyone up for failure. This is because there are three parts to the behavior chain and the consequence is just the last link. You have to look closely at what comes prior to the behavior (antecedents) and focus your efforts on pro-active solutions. These can be simple but effective steps that build predictability, reduce sensory overload, embed choices or simply take into account a range of issues in the moment when setting a boundary or deciding your course of action. Remember, changing their behavior starts by changing ours.

April 15, 2016

Supporting Emotional Expression and Regulation with ASD

Bonnie Marquis is a Positive Behavior Support Trainer with the WV ATC.
 
Emotions can be tricky for many with ASD. Trouble understanding and identifying even some basic emotions both within themselves and in others is more typical than not for people on the spectrum.  So often they seem to from “zero to 60” in an instant. The reasons for that are complex and individual to each person, but on going coaching and support by a supportive parent or family member can be critical to developing this important life skill. How to express emotions and doing so with an intensity level that is appropriate for a given situation can take considerable time and effort but is a foundational social skill necessary for successful relationships of all kinds.
Setting aside a time when both you and your family member are calm and relaxed to discuss this topic can help set the stage for future ‘coaching’ when the time comes. It’s important to stress that his feelings are perfectly valid and legitimate, whatever they may be, but that you wish to help with expressing them in ways that are appropriate and are not going to lead to more difficulties and potentially negative consequences. Try to take a supportive and problem solving approach and avoid judgment as much as possible. For some it is helpful to know this is a very common with ASD and part of how they are ‘wired’.  However, for their own benefit they can and should try to learn effective ways of coping and expressing themselves.

One of the best ways to do this is to practice with role play. For some it might also be helpful to make a visual list of some potential options (just words, words with pictures, or just pictures – let them decide, with guidance if needed).  Pick just 2-3 options and talk about how and when to use them.  For example, “walks/runs with permission” or “jumping on the trampoline” are effective ways to work through anger but are not always immediately available. Try to come up with several ideas with at least one option that can be accessed in just about any situation (deep breaths while silently counting to 10 for example). Again, just a few minutes of practice, discussion and role play will help and may also be an enjoyable experience that strengthens your relationship.
For some children, expressing strong emotions is tied with delaying or escaping unpleasant activities and it is important to be aware of this – if it is truly too difficult then you should reconsider the demands or offer more assistance. If it is merely unpleasant (cleaning up after himself, basic age-appropriate chores) then allow some expression of unhappiness (appropriate choices only) but remain firm in the demands. Maintaining a calm demeanor but insisting on the completion of the task is very effective, especially if it is followed by a fun or pleasant activity when and only when the first task is complete.   

As your child practices these new skills in expressing their strong emotions it is important that you coach them along with prompts and redirection, always accepting the FEELINGS as valid, even if it appears to you to be an overreaction, while encouraging the use of proper choices in how these feelings are expressed and processed. The stronger and more intense they feel the longer and more physically they may need to convey it. Allowing this time does not mean however that you need to ‘feed’ it with attention as that can become its own reward. This is why a visual cue of a proper choice can be helpful. Obviously legitimate major upsets can be nurtured and supported as you would anyone. This is where knowing your child and making judgment calls becomes key.
Discussing intensity of emotion will also be helpful. Many folks on the spectrum have tremendous difficulty with this concept (the “0-60” thing). So if a minor event causes major upset and they are ‘over-reacting’ allow them to first express themselves and validate the feeling, but then try and see if you could ask them if they were really “more irritated than furious” or “a little nervous rather than panicked”. And this mis-match is just as likely to occur with positive emotions as well! Getting overly excited and boisterous about what most would consider a mildly pleasant event can cause them to lose the respect of their peers and further contribute to some social challenges.

The timing of such comments will be important and you may need to make a note for yourself to visit this after the emotions have subsided, otherwise no matter how you phrase it they will perceive your comments as dismissing their feelings and may not be receptive to your efforts to help. You may also want to first focus on making good choices in how to show their feelings before moving on to more reasonably match the trigger to the level of intensity.
Resources such as the Incredible Five Point Scale developed by Kari Dunn Buron can be very helpful by turning this very abstract skill into a more concrete concept. If 5 levels are too sophisticated for your learner, you can adapt it to just include 3 or 4 levels. The ATC library has several copies of this resource for registered families to access.

Everyone has challenging emotions at times and we all find ourselves occasionally overwhelmed. But being ruled by feelings beyond our control on a near daily basis is an additional hurdle no one with an ASD should face without support. Patience, guidance, and understanding of how to work with these issues will improve the quality of life for everyone and can be an important step in sustaining mutually satisfying relationships.

December 18, 2015

Quick Tips for Getting Through Holiday Break


The following is written by Bonnie Marquis, a Positive Behavior Support Trainer for the West Virginia Autism Training Center. 
The holiday season can be joyous and everyone needs and wants to have a great break. But there is undoubtedly increased stress and sometimes a bit of confusion at what to do with all this extra time as well. Remember too that the excitement, anticipation and altered schedules make self-control much more difficult for those on the spectrum.  Try not to ‘over schedule’ outings and activities but also try not to have too much down/unstructured time and excessive video/screen time. Such situations can be a recipe for meltdowns or make the transition back to regular schedules much more difficult.
Providing a ‘schedule’ can be an enormous help. Some will need this presented visually, others are fine with simple text or even a verbal review of the day’s plan. But having a plan is key. Include a few personal or household responsibilities along with alternatives to screen time  so that your child has something engaging to do, rather than just saying “Don’t be on your device” or “That’s enough, do something else”

For example:
ü  Wake up
ü  TV time (set a time limit)
ü  Breakfast
ü  Dress/brush teeth, make bed (maintaining part of the regular am routine for school)
ü  Video game/screen time (with established time limit)
ü  Walk the dog
ü  Review/plan the day’s activity (trip to the mall, friend comes to visit, etc.)
ü  Lunch
These need not be rigid or tied to a strict time table, but it is helpful to everyone if there is a little structure to the day and it can help your child predict what will happen and what may be expected of him. Remember if you are visiting friends or relatives, even for a short time, it is a good idea to review some desired behaviors: “Remember Grandma has a lot of delicate items in her living room so you have to be careful in there” and some children may need more specifics, such as “When in there keep your hands in your pockets."
In addition, you may need to have a talk about relatives wanting to kiss and hug your child. If your child is prepared for this they may not mind. But it may wise for you teach a script or phrase for a polite refusal. Relatives may also need a reminder that your child prefers high fives or handshakes if that works better or your child is non-verbal.

Daily physical activity is also important so walks, trips to the park or if possible indoor pools or ‘bouncy houses’ can be part of a day’s planned outing. If these are not possible try a ‘dance party’ in the house or choose one of the physical gaming options if you have one. Or, go low-tech and have an indoor snow ball fight! These can be really fun and physical. Turn up the music and use the end of the song to signal a break to regroup and determine if you want to do another ‘round’ or take some deep breaths and move on to something else. Grandma’s living room would not be the best setting for this however, so choose your space wisely. Simply use balled up wads of paper or make white pom-poms if you are feeling ambitious.
If your child enjoys crafts try a new one or plan a trip to the store to pick something new. But know your child’s limits. If attention or detailed work are challenging be careful with your selection.  Sometimes simpler is better – here are a few inexpensive ideas to try that can appeal to children with a wide range of skills, interests and abilities.

Links to activities:
Above all you want to have a relaxing and enjoyable time over the break. And while maybe all this planning and building of proactive strategies seems like more work, the pay off in terms of fewer meltdowns and reduced stress will make the effort well worthwhile.  So have a wonderful, fun filled break no matter how you choose to celebrate it.
 
 
 
 
 
 
 
 
 
 






 










October 06, 2014

FF - PBS: What Are You Waiting For?


The following is written by Bonnie Marquis, a Positive Behavior Support Trainer for the West Virginia Autism Training Center.
Many people who register with the WV Autism Training Center (ATC) also apply for the Family Focus Positive Behavior Support program. So popular is this program that many people mistakenly believe that this is the only service we have and since there is a wait time of up to two years, they never bother to register with ATC at all.  And although many do apply, they do so without really understanding what it is they are waiting for.
Anyone who has registered with ATC should already know of the many services available throughout the entire state. These range from the free coaching sessions and the amazing and up to date library, to the skills groups, resource referrals and other trainings, all of which are free to registered clients and families.  New training formats, delivery options and topics are constantly being developed as well.

But what exactly are they waiting for with this FF-PBS program? In short, it is an incredible opportunity to have the knowledge and expertise of an ATC Positive Support Trainer as they facilitate a process that has the capacity to dramatically improve the quality of life for both the focus person (the client with an ASD) and the entire family. In some circumstances the process also results in improved services beyond the focus person as teachers and service providers are offered the opportunity to learn new skills and strategies that can be implemented with others now and in the future.
The process is individualized and difficult to summarize since the way it unfolds varies based on the needs of the individual and the dynamics of the team. However, certain aspects of gathering information and developing an action plan to achieve team selected goals are somewhat standard. In every case however, it is time consuming. Because it is firmly based on principles of person centered planning and incorporates a collaborative team approach, it sometimes seems to move at a snail’s pace and much will be asked of families and team members that choose to participate. This often takes the form of home visits, school meetings, trainings and coaching sessions (to assist in the implementation of selected strategies).  Families may also be called upon to collect information regarding the behaviors they want to address so the trainers can assist in determining their cause and help develop a meaningful support plan which will result in lasting improvements.
The process also often asks participants to make some changes – to their routines or structure of activities, how they respond to behaviors or venturing out to engage in new activities. But the changes are never dictated. Rather they are decided upon by the team as a result of discussion, consultation and learning new information. Nevertheless change can be difficult and it can often feel like three steps forward, two steps back.

But with the support of ATC many teams have seen some truly amazing results when they have embraced the process.  And that doesn’t mean just taking the suggestions of the trainer. The truth of the matter is that while the trainer knows a great deal about autism, it is the rest of the team that really knows the focus person and how life is lived on a daily basis.  Their input is the vital ingredient to individualizing supports that will be most effective in achieving the goals set forth by the team. The most effective teams truly engage with the process and develop a trust characterized by honest dialogue about what should be tried, tweaked, continued or abandoned. The least effective teams nod and agree while silently thinking to themselves “this will never work.”  And the most effective teams speak up about doubts or challenges and ask for help when needed. The least effective teams fall back into old routines and let opportunities slip by, too busy or overwhelmed to make changes or seek out support. 
Because of this, the dynamics of a team can be the most important aspect of the process and team selection and development takes careful consideration. Involving people with a genuine positive regard for the focus person is vital. This is especially true if there are potential participants that regularly work with the focus person, and thus really should to be included, who may be less than optimistic. The team’s positive approach can often change those negative perspectives in surprising ways, especially as many of the tools used in the process are designed to focus on strengths, and a positive and possible future. There is also, as mentioned from the outset, a focus on quality of life. The process attempts to do this by whatever means the team decides, but it should never be limited to just reducing challenging behavior or gaining a particular daily living skill. While quality of life happens to be the focal point of ATC’s mission statement, there are practical reasons for stressing these types of goals.

 There is a tendency in our society, particularly for those with disabilities, to withhold those elements that would improve quality of life or are seen as enjoyable and desirable until they have somehow earned it, often through improved behavior or achieving some objective (unrelated to community access or the  preferred activity itself). Most often however, it is actually having something which “makes life worth living” that allows us to find the motivation or inner strength to make sustained efforts toward self-improvement.   Sometimes, among all the other services and facilitation that your trainer can provide, it’s keeping things in a positive and person centered perspective that can have the greatest impact, for everyone involved.
A final goal for FF-PBS is for participants to sustain the process and to have learned the skills and strategies needed to continue long after the ATC trainer’s time with the team has ended. To meet and collaborate as needed, set forth new goals and incorporate new team members, and build on the momentum and successes of the previous team.

Certainly, this process is not for everyone, either by design or level of need or the required time commitment.  It should also be noted that certain life circumstances (divorce, relocation, new jobs etc.)  may make participation at a given time particularly difficult and every effort is made to accommodate families if they need to suspend or postpone services or if they wish to switch to a less intensive, more focused service model that can assist with single/limited issue concerns, known as the Solution Focused Process. Knowing in advance the nature of the involvement will hopefully aid in the selection of appropriate services and  understanding  what FF-PBS is and is not (for example it is certainly not a direct therapy). And again, FF-PBS  is just one of many services available with ATC, and the agency is committed to supporting individuals with autism spectrum disorder as they pursue a life of quality.

July 30, 2014

Preparing For The New School Year

Dr. Cathy Pratt, Director of the Indiana Resource Center for Autism, provided these helpful hints to parents to best support children with ASD as they begin a new school year. The article, "For Parents: Preparing For the School Year," can be found at this link.

June 11, 2014

A Home of his Own: Transition of Vijay Patnaik - A Sibling Perspective

 Dr. Sumeeta Patnaik is the co-guardian and co-conservator of Vijay Patnaik. She is currently employed at INTO-Marshall as the Academic English Coordinator. Dr. Patnaik is a graduate of Marshall University with a Doctorate of Education.

The transition of an autistic sibling from a family home to their own home is always traumatic for the family. It is especially difficult for the non-autistic sibling, who often takes the role of a caregiver, to allow his or her autistic sibling to leave the family home. The relationship between these siblings is especially strong, with a loving bond that lasts for a lifetime. 
 
Yet a well-planned transition can effectively allow both siblings to seamlessly continue their relationship while allowing both siblings to mature and make personal progress. Supports are the key to a successful transition with both siblings receiving support from family members, mental health professionals, and members of the community. 
 
It was difficult for me to allow my brother, Vijay, to leave home and transition to his new home as I worried about the quality of his care and was concerned that he would feel disconnected from his family. Nevertheless, the proper supports allowed Vijay to successfully transition to his home, and our relationship has deepen as a result. For four years, prior to his transition, my family and I worked to try and purchase a home of his own for Vijay. We felt that this transition would allow Vijay to mature as a person while allowing his family the comfort of knowing that he was well-secured in his own home.
 
Vijay’s transition to his home began after the death of our father, Dr. Dhirendranath Patnaik, in July 2012. My inheritance, from my father, provided me with an unexpected income that would allow me to create a special needs trust and purchase a home for Vijay under that trust. Our family worked with Vijay’s support team at Prestera Center to create a transitional plan for Vijay. The plan included maintenance of his home, becoming acquainted with his neighbors, and a staff support plan that would allow them to best assist Vijay in his home. By December, Vijay moved into his home, and we celebrated a Vijay-style Christmas there!
 
Since his transition two years ago, Vijay has taken ownership of his home. He is well-liked by his neighbors, and he often has friends over for dinner. Working with his staff, we have been able to maintain his home and create a supportive environment that best caters to meeting Vijay’s needs. Vijay’s transition required a team effort, and with support from Prestera center, Vijay’s family was able to provide him with a home of his own. We hope to continue to support Vijay in his home for many years to come.

 

 

Sibling Stress


This article is authored by Luke Walker, a Positive Behavior Support Trainer for the WV ATC
 The effects felt within a family when a child has been diagnosed with an autism spectrum disorder (ASD) can be both challenging and strengthening but affects the whole family. A study from 2010 found that siblings of individuals with ASD’s displayed signs of developing hyperactivity, and supported the notion that “mothers of young autistic children experience more depression and stress than mothers of typically developing children.” (Barlow, 2010). Previous studies have had mixed findings but many suggest that siblings also experience symptoms similar to autism such as difficulties with social interactions, communication, and behavior. Furthermore, around 30 percent of siblings of autistic children have some associated difficulties in behavior, learning, or development.
One previous study looked specifically at sibling’s depression, social adjustment and the level of child care and domestic responsibility, for siblings for young boys with autism. They reported a significantly higher rating of depression compared to siblings of children without autism, but not a difference with social adjustment. (Gold, 1993).

Parental attention can also play a factor in the amount of stress for a sibling. Parents have less time and resources to dedicate to a sibling as typically most of their attention is focused on raising the child with autism. It can be a struggle to balance the needs of the child with autism versus the needs of the family and other children.
This blog article will help provide some information and resources for parents and siblings about sibling stress and how to support other children in the family.

Types of Stress on Nonautistic Siblings

Family life for siblings of children with autism can be potentially stressful. The Autism Society of America describes the types of stress commonly faced by siblings:
  • Jealousy over the time parents spend with the autistic sibling
  • Embarrassment over any public displays of autistic behavior and routines that make the family stand out from peers
  • Frustration over social interaction difficulties with the autistic sibling
  • Stressed about being the target of the autistic sibling's aggressive behavior
  • Worry about parents being stressed
  • May feel a need to overcompensate and overachieve in order to please parents and get more attention
  • Fear of serving a future caregiver role to sibling with autism
A large number of siblings of children with autism have also exhibited the following positive characteristics: (from autism.lovetoknow.com)
  • Admiration for sibling with autism
  • Proud to help autistic sibling
  • According to a Time.com article, "Autistic Kids: The Sibling Problem", a significant number of siblings of people with autism go into autism support service careers.

The needs of siblings
The website of the Autism Society of America provides an excellent PDF guide for parents to outline the needs of siblings. According to that source, some examples of the needs of siblings include:
  • Siblings need communication that is open, honest, developmentally appropriate, and ongoing.
  • Siblings need developmentally appropriate and ongoing information about their siblings’s ASD
  • Siblings need to learn interaction skills with their brother or sister with ASD

Siblings need time to work through their feelings with patience, understanding, and guidance from their parent(s) and/or a professional, if appropriate. 

The WVATC sibling program
With these needs in mind, the West Virginia Autism Training Center has designed a program to support siblings which addresses needs and provides information to the sibling. The program highlights the siblings goals and dreams using an individualized approach that can involve further education about autism, how to interact with their siblings, increase time and attention from parents or provide an opportunity to discuss their feelings.
Contact the West Virginia Autism Training Center to find out more information about supporting siblings and follow the suggested links below:
http://www.autism-society.org/living-with-autism/family-issues/siblings.html

http://www.autism-society.org/living-with-autism/family-issues/sibling-perspectives.pdf
http://autism.lovetoknow.com/Autism_and_Nonautistic_Siblings

 References
http://www.futurity.org/the-sibling-side-effect-of-autism/

http://www.autism-society.org/living-with-autism/family-issues/siblings.html

Gold, N. 1993. “Depression and social adjustment in siblings of boys with autism”, J Autism Dev Disord. 1993 Mar; 23(1):147-63.