Category Archives: Caring for children with autism

Tween and Teen Years with Autism

Watching your child grow, mature and change can be bittersweet. Watching this evolution in a child who struggles with ASD or autism, can elicit a whole range of emotions. How will typical teenage rebellion look in someone who struggles with behavioral control? What will middle school and high school be like with a child that not only is dealing with hormonal changes but also the social, emotional and sensory issues common in a child with autism?

Research into autism in the teen years and beyond is still in its infancy: “very little is known about the course of ASD through adolescence and into young adulthood,” according to the Interactive Autism Network.  Autism is a broad spectrum, and adolescence will affect each child differently. If recent studies are an indication, parents generally can expect some of the following positive changes along their child’s road to adulthood:

  • Behavioral improvements across the spectrum. Adults with autism have less hyperactivity and irritability, and fewer repetitive behaviors (such as lining things up) and maladaptive (dysfunctional) behaviors, than children with autism.
  • Improvements in daily living skills – such as getting dressed, keeping track of cash or making a sandwich.

Some negative changes may include:

  • A risk period for the onset of seizures in autism, although most teens do not develop epilepsy. 

  • Childhood sleep problems may persist into adolescence, when insomnia and daytime sleepiness become the biggest concerns. Sleep changes are very common in typical teens but can be exaggerated in children with autism. 

  • Anxiety disorders may increase or develop during the teen years. Be aware of anxiety symptoms and work with team members and therapists to reduce anxiety in the classroom and at home.
  • The gap between the students with autism and their peers widens in something called “executive functioning” during the teen years. Trouble with flexibility, organization, initiating activities and working memory are commonplace with executive functioning disorders that worsen or develop during the teen years.

Further Resources to help your teen in school.

Autism SpeaksHelping Teens with Autism Succeed in High School and Beyond

Psychology TodayThirteen Things Parents of Teens with Autism Need to Know

 

 

New Year’s Resolutions for Caregivers

According to the Family Caregiver Alliance and National Center for Caregiving, approximately 43.5 million caregivers have provided unpaid care to an adult or child in the last 12 months. This may be physical, emotional or mental support for a special needs child, as we see often in our field. Caregivers, however, often forget to care for the person who may need it the most – themselves. 

Caring for a loved one, whether it is a close friend or a family member can be exhausting and emotionally and physically draining. The sleep deprivation, worry, stress, and poor eating habits because you are focused on caring for someone you love can cause you to become ill yourself.  How ironic, isn’t it?

Here are ten New Year’s Resolutions to try this year if you are a caregiver.

  1. Accept Help – We know that no one does it quite like you do-  but accept help whenever you can and do it without guilt. Be prepared with a list of ways that others can help you, and let the helper choose what he or she would like to do.
  2. Join a Support Group. There are millions of caregivers all over this country who know what you are going through and the stress that you feel.  Talking is excellent therapy and a stress reducer.
  3. Do What You Can. You can not do everything without sending yourself to the hospital. Dole out jobs that may seem small but anything to take the burden and responsibilities off of you the better.
  4. Set a Routine. Everyone loves routine. Setting one can help your family member understand what is coming next and aid in transitions.
  5. Visit the Doctor. You probably have several doctor or therapy sessions for the person you are caring for, but, also, take care of yourself. Don’t skip your own appointments or self diagnose an illness.
  6. Connect Socially. Getting out as a caregiver might seem like a huge luxury but even connecting on social media may help.
  7. Recognize your Limitations. Everyone has a breaking point. Yours may be not getting enough sleep or not having enough help. Talk to other family members about your limitations and be honest.
  8. Learn about the Family and Medical Leave Act (FMLA). If employed, take advantage of the Family and Medical Leave Act. This act requires employers with 50 or more employees to provide up to 12 weeks of unpaid, job-protected leave for employees who need time off to care for a seriously ill family member.

  9. Get Outdoors. Even if it’s only a few minutes the fresh air and new perspective can do a world of good.  If you have time, take a walk to keep yourself healthy.

  10. Get Sleep. Strive for a minimum of seven to eight hours of consecutive sleep in a 24-hour period. Nap when your loved one naps.

Practical Tips for Parents – Avoiding Unwanted Behaviors

Let’s face it, we all have bad days every now and then. Usually we deal with the mood and move on. Most of us may even know and understand what caused the mood to begin with and how to avoid it in the future. If you have a child or teen with autism you may have to learn a whole new set of cues to help you understand situations where behavior becomes a problem.

Going out or encountering new stimuli, no matter how much you think you child may enjoy it, can be challenging. Planning in advance can mean the difference between a meltdown or avoiding unwanted behaviors. Here are a few suggestions we found online from parents who have been through this before.

  • Be aware. Many parents know what stimuli whether visual, auditory or other trigger unwanted behaviors. Try avoiding situations that may cause anxiety and stress. For example, your child may enjoy keeping you company on outings but gets tired in the early afternoon, then plan your events for mornings or after a nap. Keep in mind this means that you may need to plan your day around stimuli that may cause problems but it may be worth it in the end.
  • Make Expectations Clear –  You’ll get better cooperation if both you and your child are clear on what’s expected. Sit down with him/her and present the information verbally.

  • Have Options – If your child has meltdowns or is rude to someone in public, you have a few different options. You may need to experiment to determine what works best for your family. Removing the child from the situation may work best but you may also want to consider other options. Some parents have the child calm down and apologize. Even others keep a card in their pocket that explains that their child has autism. Still others only visit outing locations where they know people who are understanding and sympathetic.

  • Talk to the Team – If your child has already been diagnosed, you may want to decide with his/her team of specialists including PT, OT and Behavioral Therapists what behavior modification you will use. If you are all on the same “page” it may make heading off unwanted behaviors easier.
  • Avoid Transitioning without Warning – Transitions can be hard for kids, especially in the middle of something they are enjoying. Having transitional warnings gives children the chance to find a good stopping place for an activity and makes the transition less fraught. Tipping your child off that a transition is coming can ward off meltdown behaviors. 

Learn the Signs of Autism and Take Action

As a parent you never want to believe that there may be a problem with your precious bundle of joy. If you do have an inkling that there may be an issue, however, autism experts say that you should act sooner rather than later. When it comes to autism, catching it early, ideally by the age of eighteen months, can make a huge difference. Early intervention and treatment can reduce the effects and help your child learn, grow and thrive. 

As a parent, or even a caregiver, you are in the best position to spot the earliest warning signs. If you are the primary caregiver, you observe your child more than anyone else. Your observations and experiences can be invaluable when it comes to early diagnosis and subsequent treatment of autism or any of the autism spectrum disorders. The key is to educate yourself so you know what’s normal and what’s not and then trust your gut. If you think something isn’t quite right take action. Start with your pediatrician and from there ask for an evaluation or a specialists if you feel there is still a problem. 

Recent research conducted by Autism Speaks confirms that appropriate screening can determine whether a child is at risk for autism as young as one year. While every child develops differently, we also know that early treatment improves outcomes, often dramatically. Studies show, for example, that early intensive behavioral intervention improves learning, communication and social skills in young children with autism spectrum disorders (ASD).

The M-CHAT screening (Modified Checklist for Autism in Toddlers) can help you determine if a professional should evaluate your child. This simple online autism screen takes only a few minutes. The M-CHAT is validated for screening toddlers between 16 and 30 months of age, to assess risk for autism spectrum disorders (ASD). The M-CHAT can be scored in less than two minutes. Scoring instructions can be downloaded from http://www2.gsu.edu/~wwwpsy/faculty/robins.htm or www.firstsigns.org. Children who fail more than 3 items total or 2 critical items (particularly if these scores remain elevated after the follow-up interview) should be referred for diagnostic evaluation by a specialist trained to evaluate ASD in very young children.

Safety Devices for Families with a Child on the Spectrum

As parents we all worry about our child(ren) getting lost, wandering off or just getting into some sort of predicament. The concern is felt even more so by parents of special needs children such as children on the spectrum. Most alarming are the number of cases of children on the spectrum who wander. Here is a great source of devices that can help you have peace of mind and the feeling that you are keeping your child safe.

  • Child ID Cards – These kits can be found online or your child’s school may have access to them. Many kits contain items such as: DNA & Fingerprints on file,  3 ID cards (1 for the child, one for parents with the Medical Release card, and one for school/teacher).
  •  Shoe ID Tags– Many children may lose an ID tag so these shoe ID tags stay connected to the shoe of the child and contain all pertinent information that will be used to return a non-verbal child home.
  • AMBER Alert GPS – AMBER Alert GPS keeps families connected by enabling instant one-touch contact between kids and caregivers. A child can quickly, at the touch of ONE-button, speak with & receive calls from a caregiver, trigger a precise GPS location, and issue an email SOS alert to pre-selected persons of trust. Built-in safety features can be customized to trigger an alert including safe zones, low battery, breadcrumb tracking, speed limit, and proximity to homes of registered sex offenders – all of which are accessible via a secure online dashboard, mobile app or email.
  • Care Trak – The Original Law Enforcement Rescue Program that electronically tracks people with Alzheimer’s who wander and special needs kids. Sheriffs, Police, Fire Departments, SAR Teams, etc. use Care Trak to quickly locate at risk individuals.
  • The Safety Sleeper – The Safety Sleeper has a zippered enclosure that keeps your sleeper safe in his/her own bed and prevents them from unattended wandering. This gives your sleeper the freedom to wind down and go to sleep on their own, while giving you the peace of mind that your child is safe.

For more devices that will help find or discourage your child from wandering check out these 10 Resources And Devices For Wandering Children With Autism.

Changing Schools with a Child with Autism

With summer quickly drawing to a close many families are focusing on stocking up on needed school supplies or possibly a new outfit or two. Still others may be trying to fit in one last get-away before the school year begins. For parents and children who are transitioning to a new school,  however, there is a whole different type of preparation going on. Adjusting to the start of another school year can be a difficult one for any student but, if you are a parent of a child on the spectrum, you know that there are transition issues you will need to prepare for long before the end of summer. Here are some suggestions from experts at Child Mind Institute and Children’s Hospital to make your family’s transition to a new school an easier one.

  • Visit the New School – Parents with children on  the spectrum know that stress from the unknown can be unbearable for their child. Find time to visit the school and meet key players in your child’s education experience. Find the bathrooms, lunch room and the area that your child will spend the most time. Take pictures (or videos) when possible to review later.
  • Talk about the New Schedule – Change, especially unexpected change, can be extremely stressful for children with Autism Spectrum Disorder (ASD). Children with ASD often prefer to have a sense of structure and to know what to expect during the day and what activity they will be doing and when. Find out from teachers and administrators what the course of the day will look like and use story boards, charts or whatever works for your child so he/she can start to learn the new schedule of the day.
  • Use a Count Down – For many children who are transitioning to a new school knowing how much time before the big change is important. Start some sort of countdown either on a calendar or on a device they use often such as a laptop or iPad.
  • Explain Why – For many children on the spectrum they want to understand why they are leaving the comfort of their old school and changing to a new one.  Whether the change is to a program that can assist your child or from a special education school to a mainstream school – explain your thinking and how the new school will benefit your child.
  • Be Positive – While you as a parent may have just as many nerves and anxiety about the change, you will want to be positive about the transition. Talk up the great things about the school.  Remember to be genuine. No need to overboard but merely accentuate the positive.
  • Brief Teachers and Therapists – While this may seem like a no-brainer, make sure you meet with your child’s team and each teacher that he/she will have throughout the course of the day.  Your child’s special education teacher can help you communicate the needs of your child clearly.

Transitioning Back-to-school

No one likes change. Change can be hard. There is no group that struggles with change more than children who are on the spectrum. Add to that change from the relaxing, lazy days of summer to the busy, responsibility-rich school days and there is a recipe for disaster. The slower, more relaxed routine of the summer days is soon to be replaced with the routine of school, homework and lots of things to do. How can you help transition your child back into school mode as gently as possible?

Let’s look at some tips from the experts at Autism Speaks and the May Institute.

  • Start a count-down calendar well in advance so your child knows that school is a certain number of days and weeks away.
  • Maintain a regular bedtime routine whenever possible throughout the summer. If that isn’t possible, then plan a week or more in advance to firm up the school-time bedtime routine and time.
  • Visit your child’s new classroom and if at all possible check in with his/her teacher. If your child has already met the teacher, talk about the teacher’s name and the classroom. Talk about what he/she will learn this year.
  • Update all health forms through the school nurse or secretary.
  • Learn the new routine and practice it. Many children on the spectrum benefit from transition books with picture and explanations of the new situation. For instance, having a picture of his/her new classroom or teacher may help immensely. Take a picture of the drop off location and where his/her personal items will be kept. (locker/cubby)
  • Review your child’s IEP.  Make sure you know what accommodations and changes have been made for this school year. Alert your child to anything that may be different.
  • Talk, Talk, Talk. One of the most important things you can do is to talk to your child about fears, anxieties and how the new school year is going. Check in with them daily especially at the beginning to make sure nothing unexpected has come up.
  • Prepare yourself. Your child may not be the only one who is anxious about the start of a new school year. Prepare yourself by talking to the school administrators/school counselors to express any of your concerns. If you are calm it will go a long way in allaying any of your child’s anxiety.

Autism and College

Leaving high school and navigating through the social, emotional and educational maze known as  college is complicated for everyone. But if you’re a student on the autism spectrum who is about to enter higher education for the first time, it might be a little bit more complicated for you. Many autistic teens out there have the intellect to make higher education a breeze, but are lacking in some of the social, time management and organizational skills they’ll need to make the grades they deserve. Luckily, there is a wide range of colleges out there stepping up to offer support and help for students with autism spectrum conditions.

Regardless of where a student falls on the spectrum, there are college programs designed for him/her.  Whether the student/parents have concerns about navigating college social life, getting appropriate accommodations, getting to places on time or dating and relationships, there are resources that can guide you and your young adult along the way. Many post-secondary institutions around the country offer training and certification programs as well as individualized and group support services. Here are a few to look into further depending upon the needs of your child.

  • Mercyhurst University has a unique program called Autism/Asperger’s Initiative (AIM). This pioneering program is designed to help students overcome the kind of challenges that most students with autism face. AIM concentrates on honing particular skill areas. such as social skills or executive functioning skills.
  • Drexel University Autism Support Program: Drexel has one of the most comprehensive autism support programs out there for college students today, aiming to create a more diverse experience that includes those with not only cultural differences, but neurological ones as well. Through DASP, students can find peer mentor training, support from advisors, as well classes and programs to help them better adapt to life in college. Additionally, students can work to become advocates for the condition on campus and eventually pay their help forward by supporting successors.
  • Boston University Supported Education Services: Free to anyone attending BU, this program offers individualized assistance with building academic skills and supporting students with autism disorders during their time in college. It can be a great way for them to get help in adapting to college life and finding the motivation to seek out social interactions. Additionally, BU is a great place to follow the latest research being done on autism today, and students in the life sciences may even be able to take part in making discoveries that could change how the medical field sees the spectrum.
  • University of Connecticut SEAD Program: The goal of this program is to help students and their families make the transition to college a smooth one, assisting the former in learning more about their disability and how to function as an independent adult. It is open to any student accepted to the university with an autism spectrum disorder and is available at varying levels of intensity. Participants receive access to support from staff, weekly meetings and a range of materials that can make the college experience a whole lot less intimidating.

Great Summer Reading for ASD

Summer is one of the only times of year that I seem to get to catch up on all the wonderful books that may help organize my life as a mom of a special needs child.  I usually keep a running list of books that I would love to get to read but never have the time between driving to therapies and keeping my family running on a day-to-day basis. My list usually grows after each annual celebration of Autism Awareness Month every April.  Here are a few books that I have found that come highly recommended from various sources such as: Scholastic, Autism Speaks, and New Horizons Professional ABA Services.

  • Roar the Little Dinosaur Series by Hazel Reeves – This series is meant for children with autism. The author, a mom with a daughter who has autism, wants children to know it’s okay to do things differently.
  • Understanding Samantha: A Sibling’s Perspective of Autism by Dustin Daniel is a great book geared toward siblings especially older children who are trying to deal with and understand their sibling’s sensory issues.
  • Leah’s Voice by Lori DeMoniais another great find for siblings to deal with understanding certain common behaviors of siblings with autism as well as a wonderful resource for teaching siblings and friends about inclusion and acceptance.
  • The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents) by Elizabeth Verdick and Elizabeth Reeve The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents)M.D. is a friendly, thorough handbook for children on the autism spectrum, plus their parents. This book addresses the big questions kids ask and provides strategies for communicating, making friends, and succeeding in school. It includes sections on brain and body basics, symptom management, exercise, diet, hygiene, relaxation, sleep, toileting, and “stims.”
  • Autism Answer Book: More Than 300 of the Top Questions Parents Ask
    by William Stillman is a comprehensive guide to autism and all the questions friends and relatives will have once a diagnosis has been given.
  • Essential First Steps for Parents of Children with Autism: Helping the Littlest Learners
    by Lara Delmolino, Ph.D., BCBA-D and Sandra L. Harris, Ph.D. is a great resources for parents beginning the journey of diagnosis and treatment for their child.
  • 1001 Great Ideas for Teaching & Raising Children with Autism or Asperger’s: Expanded 2nd Edition This book should be required reading for all those who love, work, live, and care for children, especially those with autism spectrum disorders (ASD).
  • The Thinking Person’s Guide to Autism Edited by Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham and Carol Greenburg. Fifty-five essays written by  contributors from the autism community in all walks of life. This collection of stories was written by autism parents  about the ups and downs they experience every day. Some are written by professionals who care for and counsel autistic children and others are by autistics themselves who bared their souls so others will understand.

 

The What and Why of Stimming

Believe it or not, all of us do some form of self stimulation throughout the course of the day whether it is tapping a pencil, chewing on nails, cracking knuckles, twirling hair during a movie or rocking when tired. Self Stimulation, or stimming for short, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autistic spectrum disorders. Parents whose children are on the spectrum are probably well aware of the unique stimming activities of their child.  For those of you who are looking to understand this behavior better here are a few pieces of information to help you gain insight into the “what and why” of self stimulation.

What are common “stimming” behaviors?

Here are some stereotypical stimming behaviors.(Source: North Shore Pediatricians)

  • Visual: Staring at lights or ceiling fans; repetitive blinking; moving fingers in front of the eyes; hand-flapping, gazing at nothing in particular; tracking eyes; peering out of the corners of eyes; lining up objects; turning on and off light switches.
  • Auditory: Vocalizing in the form of humming, grunting, or high-pitched shrieking; tapping ears or objects; covering and uncovering ears; snapping fingers; making vocal sounds; repeating vocal sequences; repeating portions of videos, books or songs at inappropriate times.
  • Tactile: Scratching or rubbing the skin with one’s hands or with another object; opening and closing fists; tapping surfaces with fingers.
  • Vestibular: Rocking front to back; rocking side-to-side; spinning; jumping; pacing.
  • Taste: Placing body parts or objects in one’s mouth; licking objects.
  • Smell: Sniffing or smelling people or objects.

Many parents of special needs children seek to stop the behavior but the real goal should instead be understanding the reasons why this behavior is happening. Instead of stopping the stimming (which could be quickly replaced by another type of stimming) parents and relatives (and teachers) should look at the motivations behind the behavior in order to understand the needs of the child better. For example there are several hypotheses and known causes for stimming:

1. Overstimulation – stimming can help block out excess sensory input. Is there too much sound, lights, people, smells?
2. Understimulation – stimming helps provide extra sensory input when needed. Does the child need to be engaged?
3. Pain reduction- repeated banging of the head or body actually reduces the overall sensation of pain.  One hypothesis is that stimming causes the release of beta-endorphins in the body, which then causes a feeling of anesthesia or pleasure.
4. Management of emotions – both positive and negative emotions may trigger a burst of stimming.  We’ve all seen physical reactions to joy or excitement, such as jumping or hand-flapping.  Frustration or anger may intensify a stim to the point that it becomes destructive.

5. Self-regulation – some stims serve the purpose of soothing or comforting.  Many infants learn to suck their thumbs to relax themselves.