Young Adult

All Articles in the Category ‘Young Adult’

Come As You Are: An Autistic’s Perspective

Trigger Warning: Self-Harm

These thoughts… these four words, the phrase, “Come as you are, ” they’ve been circulating around in the back of my mind for the past three weeks now. It’s been becoming more constant, as I sit here, late morning coffee in hand and an hour and a half since I’ve taken the routine medication for my severe ADHD that I have had since childhood (doesn’t help that there’s been a massive shortage of these types of medications, inconsistent quality as well). It’s been becoming more constant, the struggles of keeping myself from doing something impulsive that I’ll probably later regret, just struggling in holding off from wanting to smash my head against the wall, bite others, or  crying silently whilst lying on the frigid linoleum tiling of bathroom floor, but that’s not why you’re reading this (and besides, I’ve been racking my brain for three hours now to type out this blog post already, cursing myself out loud because try as hard as I might, I wasn’t able to cohesively put together even an brainstorming outline to plan ahead). What’s really helped me through these hard times is nature. Sunshine. And knowing that these hard times will pass, too. Sunshine, and video games.

Sorry for that tangent, readers. Though, maybe it does lead into the theme of Autism Acceptance Month and “Come as you are”. If you’ve been a long-time reader of the blog, you might remember that I’ve curated several contributions to The Autism Blog over the last decade, so I’m not exactly new at this. However, I’m distracted by everything and trying to just let it be, without punishing myself, or at the very least not as harshly. Trust me when I say that coming as I am certainly is a lifelong process.

Ya know what, how about I update you all on my positive aspects of my progress as an autistic living in a world that is clearly still, in the year two-thousand and twenty-three, not made for them? Look, I’m not dismissing or downplaying the unbelievably harsh days and moments of sensory peril, inattention, emotional dysregulation, deep depression, spatial unawareness, and all-around executive functioning challenges inherent to co-existing alongside neurodevelopmental and related disabilities. Not even close. Describing the intricacies of why I feel like I’m failing at “Come as you are” would take many pages of background and context, and I wish to respect your time. Let’s move on, then, shall we?

Continuing onto the updates to my life since my last blog during the early weeks of COVID, my life has generally changed for the better. I have since graduated college, from the UW, in the area of Maternal and Child Health, through the LEND program that further specializes in treating co-occurring conditions associated with I/DD and focusing on bettering the lives of individuals with these conditions. Took over 600 hours of didactic, clinical, and educational training, but I’d be lying if I said I weren’t proud of myself for accomplishing that. In addition, I’ve gone from being a student at the Alyssa Burnett Center, to an employee of Seattle Children’s Hospital ABC staff, working on the other side of the window, so to speak. I also teach and lecture postgraduate-level curriculum as Self-Advocate Faculty in the LEND program at the UW Medical Center main campus in Seattle. Last, but not least, I am part of the core ECHO hub team for ECHO Washington Autism/WAINCLUDE, which is closely related to UW CHDD and LEND. There, I work with other healthcare professionals from all walks of life, in an interdisciplinary team of providers virtually, to connect with other providers in the state and to teach best practices and share everyone’s knowledge about how we can all best serve the most marginalized groups and communities of individuals with I/DD.

Also, I want to point out that there have been major advances in committing to letting people come as they are. I can’t think of a better example of this than the Alyssa Burnett Center. Even if I am not feeling my best, it means everything to me to be able to work in an environment where my co-workers will take the time to check up on me, ask what I need, and for that, I am very grateful. Also, I’m allowed to stand and move around while working, provide large-print physical copies on needed documents, and stim in all the many ways I might need concentrate and regulate my sensory issues. Students can also come as they are. Everyone is welcome to come as they are to the ABC, so much so that the students even made their own acronym for it called RISE (Respect, Include, Support, Enjoy). It’s awesome!

If you’ve made it this far, thank you, reader. I’m happy you stayed until the end. I just wish I feel like I had my own version of accepting myself, letting myself come as you are. I’m working on that, but everything takes time. With that, until next time!

 

 

If you or someone you know is having thoughts of suicide or experiencing a mental health related crisis, call or text 988. You can also visit 988Lifeline.org to connect with a trained crisis counselor who can help.

Inclusive Music: Sound Bites from the Alyssa Burnett Center

In our dominant culture, music is for the gifted and talented. A person must be thoroughly skilled in an art for them to be taken seriously and celebrated. TV shows like American Idol entertain viewers with failed auditions and celebrate a chosen few. In our culture, only the most skilled and able are rewarded for doing music. Read full post »

The V1ADUCT Clinical Trial for Autism Spectrum Disorder

We are currently looking for people to take part in V1ADUCT – a clinical trial that will assess an investigational drug to see if it can help adults with autism spectrum disorder (ASD) manage certain social and communication challenges a little better.

Adults with autism see, hear and feel the world in a unique way. We don’t want to change this. But sometimes, adults with autism may find certain situations challenging. So we’re developing an investigational drug to assess whether it can help adults with ASD manage certain social and communication challenges a little better.

To learn if the investigational drug works, we’re looking for 350 people to join the V1ADUCT clinical trial. Each one must (among other things):

  • Be at least 18 years old
  • Be diagnosed with autism spectrum disorder (ASD)
  • Have someone they see and speak to regularly, who is willing and able to be their ‘study partner’

To find out if you are eligible for this study, please visit the V1ADUCT WEBSITE

If you need additional information or answers to any questions about the study, please email Stacy Riffle, Research Coordinator: [email protected] or call: 206-987-7502

Autism 200 Series: Transition to Adulthood: Abuse & Neglect of Adults with Developmental Disorders

Please join us for Autism 207, the second of a 2 part series: “Transition to Adulthood”. People with developmental disorders are at an increased risk of abuse and neglect. This population also appears to be at an increased risk of exposure to intimate partner violence in childhood, which can produce lasting effects. At the same time, post-traumatic stress can be very difficult to detect and treat among developmentally delayed adults. This presentation will outline primary risks, as well as recommendations for assessment and treatment of trauma and neglect in adults with autism and developmental disorders.

 

Rachel L. Loftin, PhD, is a clinical and school psychologist who specializes in autism spectrum disorder (ASD). She has extensive experience in diagnosis, assessment, and intervention to help promote positive outcomes for people with ASD. In addition to her clinical work, Dr. Loftin has been involved in cases involving special education, family, criminal, and civil law. She has particular expertise working with people with autism, intellectual disability, and other conditions that can increase social vulnerability and complicate interactions with law enforcement. Dr. Loftin’s clinical-research interests include interventions to increase independent function in young adults, strategies for increasing self-monitoring, transition to adulthood, and sexuality education and sexual identity in people with ASD.
Dr. Loftin is adjunct faculty in the Psychiatry & Behavioral Sciences Department at Northwestern University’s Feinberg School of Medicine and in the Psychiatry Department of the Yale School of Medicine

Class Schedule: This class will be held Thursday, August 15, 2019, at Seattle Children’s Hospital in Wright Auditorium from 7:00 to 8:30 p.m. Please join us in person or watch on Facebook live. For more information see the  Autism 200 Series webpage.

Ask Dr. Emily – Autism and Voting

Welcome to the November edition of Ask Dr. Emily!

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

Read full post »

Autism 206: Transition to Adulthood: Housing Options – A Panel Discussion

This month’s Autism 200 Series class is Transition to Adulthood: Housing Options – A Panel Discussion.

The housing crisis continues to negatively impact families and individuals with ASD, and it is expected to worsen, with an estimated 500,000 Read full post »

Ben’s Fund Now Offering Grants for Young Adults With Autism!

We hear it too often- what happens when our kids become adults?

Who will make sure their needs are met? How will families navigate this transition?  Where will funding come from?  Where do we go from here?

Recognizing the growing need for resources, support and direction for families with young adults on the autism spectrum, John and Traci Schneider have yet again paved the way to provide a glimmer of hope for families navigating this transition into adulthood.

Read full post »

Autism 205: Inclusion: What’s Working and What’s Next? – A Panel Discussion

People with social, intellectual and behavioral differences are making positive changes in their own lives and in the lives of others. From education to policy to employment, the future is brighter because those with autism and other abilities are speaking out, stepping up and changing the way our society operates.  Read full post »

Parallel Paths in Adult Transition

As a veteran parent of a child with autism, I thought I was prepared to handle just about anything as we approached her eighteenth birthday.

 

 

I had years of experience under my belt, locating, navigating, and accessing services for her and many others in my work.

I had my adult transition checklist: Apply for guardianship. Check. Apply for SSI. Check. Set up special needs trust account. Check. Check in with DDA case manager. Check. Look into residential housing options. Check. Everything was going relatively smoothly, which means I found my way through the mazes with a little more confidence and a little less stress than in years past. I had hit my stride, strutting my parental best-self, and moving forward.

And then the unexpected happened.

I was standing before a court commissioner at my daughter’s guardianship hearing. She was talking but my focus kept waxing and waning as I began to experience an out-of-body sensation. I was physically present but my brain felt as if it were up on the ceiling observing from above.

She was praising the fine job I’d done caring for Carrie the past 18 years. “Well, of course!” I thought. “I’m her mother!” Then she sternly looked at me and told me that from this day forward, in the eyes of the law, I was no longer her mother. I was her legal guardian – held accountable to the court. There would be records to keep and reports to file. My mind was playing tricks on me again. Of course I would be accountable. I’m her mother!

On my way back to the car, I tripped, ripping my pants and badly scraping my knee. I sat in the car, knee stinging and mind numb, and tried to make sense of what had just occurred. Why was I so unnerved?

Was it the finality of missed milestones or comparing her future as an adult to peers or her brother? No. I’ve never been one to compare her to others. Was I afraid I wouldn’t live up to the court’s expectations of me as her guardian? Nope. Not that.

This is what I came to: Her entire life, I’ve been her protector, her advocate, her teacher, her therapist, her supporter … her mother

And then one morning in court, I was not.

Nothing could have prepared me for that. This was the beginning of a shift that I realized was not just for her but for me as well.

Adult transition has proved to be as challenging as getting her diagnosis and initiating all the supports and services she has needed. It’s a lot of work and I’m 20 sleep-deprived years older than I was then.

Just as I didn’t want her diagnosis 18 years ago and would have liked to pretend it wasn’t happening, I don’t want to transition from her trusted pediatric providers – but I can’t pretend.

So, dear parents and pediatric providers, here’s my message to you as you approach adult transition for your child, your patient.

  • Don’t put off the inevitable until the last minute. Find out what the transition policy is for each of your child’s providers. It may not be the same for each department or specialty.
  • Perhaps you don’t know what resources there are for young adults in each specialty. How about exploring this together?
  • Dear provider, maybe you don’t feel it’s your job to have this talk with parents – but if not you, then who? Who better than the person we’ve trusted with our child for almost their entire life?
  • It’s likely that we’re both feeling anxious about this and wish we didn’t have to part ways. We’ve been through a lot together, problem-solving many challenges, and this is no different.
  • Partner together to make this less stressful and a better outcome for all.

 

 

 

 

 

Parent Perspective on Transitioning to Adult Care

When you have a child with special needs or complex medical issues, it takes a long time to learn about the care they need, and put together their team of doctors and other providers.

After my daughter got her multiple diagnoses, between ages two and three, it was years before I felt like we had her full team of experts in place. It was really hard work, where I had so much to learn about what my daughter needed – and so did her care team.

We’ve been developing our relationships with these providers over the many years since then. We’re comfortable with each other. I trust them to know and understand my daughter and our family. When we talk about her care, we have a shared understanding of our experience, a shared history of knowing what works for us and what doesn’t. On an even more basic level, I’m familiar with the processes for making appointments, and how billing works. I know where to park and how to navigate the buildings to the clinics we need. I even have the phone numbers of her most frequent providers memorized, simply from having dialed them so often!

My daughter turned 18 last year, and I know that our time with our familiar team is running out. This is a really hard thing to think about, because I don’t want to have to do all this work over again – finding and getting to know and learning to trust and work with a whole new set of providers. What makes this even more complicated is that every clinic or specialist we see seems to have a different approach. One of her specialists has laid out a plan that includes a recommendation of the doctor to switch to, starting next year. Another has told us when we have to leave, but not where to go. Her pediatrician says she’ll keep seeing her “as long as no one tells me I have to stop.” Several clinics have never brought up the subject at all, and I’ve found it comfortable to avoid it myself as long as I can.

And at the same time that we’re figuring out this big transition, my daughter’s going through all kinds of other “transitions to adulthood.” There’s so much to learn and figure out all at once, it seems. It’s scary and confusing for me and for her.

What I’ve come to realize, a little later than I wish I had, is that planning ahead for this change is important. Just like in the early days when she was first diagnosed, it’s going to take some hard work and effort to pull together all the resources she needs now, as an adult, to keep her healthy and thriving. I’ve discovered that there are some helpful tools out there. And we don’t have to do this alone – we can ask her current providers for support and assistance in figuring out how to move forward in the safest, smoothest way possible.

Here are some resource that you might find helpful:

Checklist for Transitioning to Adult Health Care – PE2643

Adolescent Health Transition Project

Autism Speaks Adult Transition Tool Kit

Disabilities, Opportunities, Internetworking and Technology – University of Washington DO-IT Program

DVR

Friendship Adventures – Recreational, Educational, and Leisure Opportunities for Adults with Developmental Disabilities

Giving Your Child an Active Role in His or Her Healthcare

Preparing for Transition From School to Supported Employment

Transition to Adulthood for Youth With Intellectual and Developmental Disabilities