Archive for 2017

The Autism Blogcast – July Edition

News Flash: The July edition of The Autism Blogcast, featuring autism experts Raphael Bernier, PhD and James Mancini, MS, CCC-SLP.

In an effort to keep you up to date on the latest news in research and community happenings, we welcome two of our favorite providers best known as Jim and Raphe, the autism news guys.

These two have too much energy to be contained in written format so our plan is to capture them in 2-5 minute videos that we’ll post the first week of each month. We welcome your questions and comments. Tell us what you think of our dynamic duo!

In this edition of the blogcast, our reporters discuss The Welcome Inclusion Symposium and promoting inclusion in the community.

 

The Autism Blogcast Featured on Spectrum News

 

Our fabulous blogcast anchors, Jim Mancini and Raphe Bernier, were recently asked to do a special report for Spectrum News titled “Inside Scoop from the Autism Anchors: Special Report on Genetics”.

They interviewed Seattle Children’s Autism Center’s amazing parent, Jennifer DiBona. She talked about the importance of family participation in research, and her experience. Check it out and stay tuned for more!

 

 

Ask Dr. Emily – Autism Treatment and Trust

Welcome to the June edition of Ask Dr. Emily!

We often receive questions that we want to share with all our readers. To help with this, Dr. Emily Rastall, a clinical psychologist at Seattle Children’s Autism Center, will share insights in a question and answer format.

We welcome you to send us your questions and Dr. Rastall will do her best to answer them each month. Send your questions to theautismblog@seattlechildrens.org.

Q: My twins are 8 years old have ADHD and have learning difficulties. They are in 3rd grade, but are testing at a 1st grade level. They have difficulty playing in groups of children and sometimes become very upset and angry in these situations. They both have a compulsion for water playing and often flood the bathroom at home (not intentionally, I don’t think). They refuse to wear certain clothes and refuse to eat certain foods. One of my twins is very anxious and continually coughs; we have been to the doctor to get medical treatment for the cough, but it has not worked. He still coughs for hours on end. I’m wondering if this is this just ADHD, or is it something more? I am waiting on a pediatrician to see them. I could go on, but ultimately, I need an answer.

A: It sounds like you are on the right track with asking your pediatrician. Ultimately, it sounds like you may be concerned about autism, so you will want to ask your pediatrician for a referral for an autism-specific evaluation. While sensory sensitivities, social challenges, emotion dysregulation, and repetitive behaviors are diagnostic features of autism, these can also be present in other diagnoses, such as ADHD. Ultimately, you (as the parent) are an expert regarding your children, so don’t be afraid to advocate for what you think they need, evaluation-wise. Good luck to you and continue listening to your parenting instinct.

Q: I need advice and have a question I’d like answered. First, I’d like to say I’m greatly disappointed that I’ve looked all over on Google for the viewpoint of those with autism and advice/help that can be given in certain situations and all I ever get is information on how to help parents of autistic children. I was diagnosed with high functioning autism when I was 20. I’m 22 now. I live with my parents because I have no basic life skills, but I want to get out of here because my step dad and I can’t stand each other. Since I’m autistic, still learning life skills, and only recently got my first job, I really have no way to leave this house, so I’ve tried to put on a smile and work things out with my step dad. He’s only known me for a year and has never had experience with ANYONE who’s had disabilities, not just Autism. He doesn’t know how to approach me, how to talk to me, or even how to treat me. I’d tolerate just being left alone with occasional “Hello’s” and many smiles, but he, wanting to be dad, wants to be involved in every second of my life whether he’s physically there or not. As I’m autistic, I will say, I am VERY introverted and feel like my work and house life are separate and what I do in my spare alone time should be kept private, unless I completely trust the person and find them easy to talk to, such as my mom, my sister, my best friend, or my boyfriend…my stepdad, not understanding me at all, has gotten into heated arguments with me, sometimes insulting my way of thinking, and we just don’t usually get along, so how can I trust him and talk to him easily? I feel like I’m walking on eggshells around him and I’m sure he feels the same with me.

So here are my two questions:

1.) Is it an autistic trait for me to want to open up freely and immediately about activities I’ve done to only trusted people, but close up to those who actually ask or am I just an extra kind of special? (I suppose, I feel that the people I trust and spend the most time with don’t need to ask because in my desire to talk with them, I’ll just tell them regardless, but if someone had to ask, I wonder “Why? If I haven’t said anything, then it was either a very ordinary day or I really don’t want to talk about it and if you really knew me, you’d know this about me,” and then it gets awkward because I’m silent and nervous).

2.) How do I solve these issues? I don’t know if I can keep living like this.

A: Thank you for writing in. I think most people would agree that they have a trusted circle of people with whom they can be themselves and share their experiences, emotions, and thoughts.  So really, it sounds to me like you are like most humans—you want to feel you trust someone before you’ll spill your beans. For some folks, trust is easily earned and networks of trusted others are wide. For others, those circles are smaller and trust is harder earned. How much we trust someone significantly impacts how we perceive their actions.  It sounds to me like your step-dad is trying his best to connect with you, but because your level of trust in him is not as high, his actions get interpreted as “nosy” and “boundary pushing.” Those who know you best are the most trusted and are more likely to be given the benefit of the doubt.

You’re also in this awkward in-between phase where you are working toward “individuating” from your parental units. Like a lot of young adults (autism or not), you want to be on your own and making your own rules, but still need to acquire some skills, means, or opportunity to be on your own. Parents and young adults do their best to connect and communicate during this period, but often end up butting heads. While it may not come across this way, both parties have the best intentions—parents to connect and be there for their kids and young adults to set boundaries for themselves and do things independently. This transitional period can be frustrating and challenging to navigate, and as a psychologist, I often provide therapeutic support for young adults (and parents, for that matter!) during this period. A therapist or counselor can act as a non-biased third party and is a person with whom you can vent, process, and problem solve during this time. Folks who see me during this time discuss things like self-advocacy, social problem solving, effective communication, emotion regulation, interpersonal effectiveness, goal setting, and life planning.

Good luck to you as you begin your journey toward individuation and thank you again for sharing your perspective.

 

 

 

Differentiating with an Adult Child with Autism

 For most parents and most kids, adolescence is a time of great emotional development and differentiation. They don’t want to be around us, and at some point in the life of a teen in your house, you’re pretty ready for them to leave, too. 

 

It happened like clockwork with my typically developing daughter and me; first she pulled away, then we fought. Then I got so tired of her mess and attitude that I didn’t even cry (much) when she went to college in Vermont. Now that she’s 26 we’re very close, and yet we’ve managed to forge our very own, very separate lives.

Things have always been different for Caleb. My son is four years younger than his sister, and has a significant intellectual disability, epilepsy, autism, and is deaf. Differentiation with him has been all on me.  When my daughter was fourteen, she started the battle that is growing up.  She became embarrassed by my clothes and the things I said in front of her friends and let me know all about it. She defied me and talked back.  She was identifying herself as a person who was not like me – a step so important to becoming an adult.

Caleb has never cared what I wear, and at 22, has never once said no to a chance to hang out with me. I’m his favorite person all day every day.  If I would stay home from work and cook pancakes for him, he would never choose to leave my side. 

And this is great. It’s wonderful to be someone’s favorite person ever. For twenty-two years and counting.  All day every day.

Also, it has become pretty exhausting.

When Caleb was ten, I had to insist he finally potty-train. He would sit on the toilet for hours with me on the side of the tub feeding him tootsie rolls. It took about a month and not a few glycerin suppositories, but we did it.  He’s completely independent with toileting now!  It turns out, differentiation is going about the same way so far: slow, deliberate, and very late.

Caleb was 17 when we finally couldn’t care for him at home anymore and he moved into a group home. You’d think that would be a step in the right direction, but you’d be wrong.  Every weekend, I brought him home, catered to his whims, bathed him, and tucked him in at night.  Then every Sunday I would return him, showered and shiny, to his house.  It wasn’t until Caleb was 21 that I developed the emotional separation I needed to help him begin to differentiate.  It started with skipping a weekend.  Then, instead of bringing him home, I started visiting him at his house.  Sometimes, I would only stay long enough to take him to lunch or go to the park. 

There are many reasons this separation makes me incredibly nervous: the staff at the group home need a lot more training than they get, and I sometimes seem to be the only one providing it.  Caleb can’t use a phone and won’t pay attention to me on Skype, so there’s no contact with him if I don’t go visit.  I often arrive at his house to find that no one has made him shave in a week, and that his laundry is mixed with his roommate’s and the clothes he’s wearing do not fit. He has medical issues, and I’m not sure staff understands the right things to say to doctors when they take him to appointments.  I’m not sure he will be cared for adequately if I am not intimately involved.

It’s a fuzzy line we walk. I hover somewhere between over-involving myself to the point of abandoning all hope of either of us being an independent adult, and neglecting to advocate for this vulnerable person who I love. How do you avoid codependence with a person whose needs are nearly infantile?  How do you stay mentally healthy when you spend decades making sure someone else’s basic needs are met, regardless of whether yours are?  How do we grow up, Caleb and I, into an adult relationship?

Caleb recently moved into a new group home. Every Sunday I visit, help him shower and shave, and separate his laundry.  I take him to lunch, to a movie, and shopping for his favorite snacks.  I tell myself that this will change soon.  That someday, he will be independent of me, even if he’s not independent of help.  He has to be. I am mortal and very likely to die before he does.  That’s not the only reason to differentiate, but it looms large for parents of very disabled people.  It’s not healthy for them or us to be completely enmeshed forever.  While shaving my adult son’s face and brushing his teeth last weekend, I thought about how we’re doing with this growing up thing.  I guess it’s still a work in progress.

A Tribute to Charlie Burnett

It’s hard for me to recall where I first met my friend Charlie Burnett. It may have been in an office visit with his then young daughter Alyssa, or it may have been at a charity fundraiser. Through the years, and whatever the setting, Charlie was always kind, soft spoken and thoughtful, and never wavered from his principal mission – to do what was necessary to see his daughter Alyssa happy.

 

Alyssa is now a beautiful 30 year old woman with an infectious smile that lights up a room when she enters. Alyssa has lived with a developmental disability – in her case, a form of autism that prevents her from using words, and is associated with other medical issues including intractable epilepsy. Charlie and his wife, Barbara, have been first-hand witnesses to the challenges facing people with developmental differences – in everyday life, in school, and even in institutions such as Seattle Children’s Hospital.

A story I will always remember is recalled by Charlie and Barbara, an occasion a number of years ago (well before we launched Seattle Children’s Autism Center) when Alyssa was admitted to Seattle Children’s through the emergency department for a change in her behavior. It was clear to everyone that something was physically wrong with Alyssa, but because of her communication deficits, she expressed herself through violent behaviors. The hospital personnel were ill-equipped to deal with the situation. With Charlie and Barbara’s persistence, Alyssa ultimately received the necessary medical care, but in the process it became clear that much needed to change and improve in our system of how we were providing care and support for individuals and families impacted by autism.

Charlie was not the type of person to sit around and accept these societal failures. Recognizing his position of influence as a Senior Vice President at Costco (Charlie founded the pharmacy division for Costco), he and Barbara took aim at one of the biggest gaps of support for people with developmental disabilities. In 2004, along with a close-knit group of friends and advocates, Charlie and Barbara started the nonprofit Northwest Academy for Exceptional Children, later renamed Tessera. Tessera’s mission was to provide lifelong learning experiences for individuals with autism and other developmental disabilities so that they might realize their fullest potential.

In 2008, Charlie and Barbara took charge with influential voices in the ears of Seattle Children’s leadership – supportive voices that helped us take the leap of faith necessary to see the Seattle Children’s Autism Center become a reality. This was no easy feat at the time – I can honestly say, that without the commitment of the Burnett family, the likelihood of us launching the Autism Center would have been seriously compromised.

In 2014, Charlie and Barbara again changed the face of services in our region for people with autism. The Burnetts and Tessera donated $7 million, including Tessera’s space in Bothell, to launch Seattle Children’s Alyssa Burnett Adult Life Center. In collaboration with other community providers, it offers year-round classes for adults with autism spectrum disorders and other developmental disabilities, helping to fill the enormous gap in services that occurs when other programs’ enrollment ends at age 21. Charlie and Barbara’s combined philanthropic commitment, along with Tessera, now totals about $8.5 million and is nothing short of incredible. While it was not easy to plan for and launch the center, once again, the vision of Charlie and Barbara to see a better future for Alyssa and others living with developmental disabilities proved correct. We are grateful for the Burnetts’ passion and generosity – and honored to help carry out our shared vision to provide critical resources for adults with autism.

I know if Charlie were reading this, he would deflect these successes to those around him – to Barbara, to his close friends, including Ron Yutrzenka and Mike Smith, to Costco, and to the staff at Seattle Children’s. He would reflect on the driving purpose of his work and these accomplishments – to create a better world for his beautiful daughter Alyssa. Thank you Charlie – you succeeded. I will miss you, I will always remember the sacrifices you made, and I will use your love as inspiration for the work we continue to do – for Alyssa, and for all of the children and adults that need us as their voice.