Families and Caregiving

Transitioning to Adulthood with Autism

Transitioning to Adulthood with Autism, not a linear proposition:

For our family, the journey has been about identifying developmental gaps and building independence step by step. Using a concept map, we’re revisiting missed milestones with the goal of helping our child gain back some resilience and confidence. I don’t think anyone could describe our experience as linear, and I think for many neurodivergent and/or autistic people, the transition to adulthood can be a significant challenge.

Rebuilding Independence: Using a Concept Map to Address Missed Skills in Adulthood:

Life often feels like a whirlwind, especially when recovery, parenting, and the chaos of everyday living collide. For our family, the path has been far from linear, if you have read any of this blog you get that life has been filled with unique challenges, many fails, and too few hard-won victories. Now, as my child is about to turn 21 and longs for the independence that adulthood promises, we are uncovering pieces of the puzzle that were missed along the way.

It’s not that we didn’t try, far from it. Every day was focused on survival, healing, and finding joy in the small wins. But in that beautiful chaos, some building blocks were left unattended. Now, as we stand at the precipice of adulthood, we are faced with the reality that there are gaps that will make independence more difficult than it should be. So, as we move onto the next phase we sat down and tried to figure out where the deficits were, and what we can do now to bridge those challenges.

person exhaling hard while looking confused signs all around them
Navigating life can be challenging with autism

Why Independence Is a Journey, Not a Destination

As I worked through the steps and stages, I ended up creating a concept map, a tool to help my child identify what he missed and revisit those crucial stages of development. I’m sharing it here because, well, why not? This map became a roadmap to empowerment, designed to help him understand what he needs to blend in, grow, and eventually become independent. The goal is to help him move forward with more confidence and, hopefully, resilience.

Adulthood is a puzzle built on skills, values, and experiences developed over a lifetime, but it’s not obvious when you’re 5 that the lessons you’re learning will serve you well at 25. The journey to independence is usually so carefully structured for most of us that it feels invisible. Stages of development seem to flow naturally, each skill builds on the last as we move through life, picking up problem-solving abilities, time management, social interactions, and conflict resolution along the way.

We crawl before we pull up, we pull up before we walk, and we walk before we run. Nobody has to explain the process; we simply figure it out. Most of what we need to thrive as adults is acquired through the natural flow of forced social interactions, at school, in church, youth groups, extracurricular activities like band or sports, and later on, in the workplace, through friendships, and even on dates.

But what if you’re not part of that mainstream flow? If you’re misunderstood or excluded, those critical skills and constructs can slip through the cracks. This isolation creates deficits, which in turn deepens the isolation, forming a vortex that can feel impossible to escape.

Mastery at each phase of development isn’t just important for survival; it’s essential for thriving in today’s complex world. Each stage builds toward adulthood’s expectations. And here’s the thing: adults just expect other adults to know these things, to intuitively understand how to navigate life. But for those who missed those foundational lessons, the path to independence can feel far more daunting.

Early Developmental Gaps We’re Revisiting

When we look back, it’s easy to see how life’s overwhelming demands caused some early building blocks to slip through the cracks. Skills like trust, communication, and basic self-care, often taken for granted by others, weren’t solidified in the way they should have been. Now, we’re re-focusing on some of those foundational skills. Working together to refine communication skills, emphasizing healthy boundaries, clarity, and understanding. Trust is about creating a safe, consistent environment where my almost adult feels safe to speak his truth but also being heard and supported. Small victories, like mastering a morning hygiene routine, managing a personal schedule, and even doing dishes and laundry, remind us that it’s never too late to learn.

Navigating Adolescence with a Fresh Perspective

You may remember middle school years were a sh*t-show, a period where chaos pulled us in stupid directions. Skills like time management, emotional regulation, and responsibility took a backseat to our more immediate concerns. As a result, tasks that should now be routine, like staying on top of commitments or managing emotions during conflict, are instead the source of confusion and misunderstandings. These skills need to be broken into manageable pieces to become rote. My child has to take ownership of daily tasks and long-term goals thereby prioritizing his emotional intelligence by practicing mindfulness and understanding emotions, for example, reframing “I am furious” when something goes wrong, to “You’re frustrated because you didn’t get your expected outcome, but there will be other opportunities, and that’s okay” we nurture self-awareness and emotional regulation. The more we practice these conflict resolution skills, the more I am seeing his confidence grow. So even though we missed dozens of opportunities to build resilience in our young adult with autism, we are learning to navigate those skills now.

Reclaiming the High School Years: Lessons Lost to COVID

We are still cursing COVID lockdowns. It did immeasurable damage to his mental health, his independence, his maturity, his confidence, his coping skills, and anything else you can think to throw in there. He was isolated, lonely, and alone, not one single person came to visit during those lockdowns, and there were no Zoom calls, phone calls, or people checking in. He was invisible at school, he became more invisible when he was forced to be home. Once school went back in, having lost access to his aides and IEP for over a year, he was just never able to regain what he lost. High school is supposed to be a time of preparation for independence, but for us, it was about survival. Now, we’re trying furiously to learn those critical lessons from that time: Job readiness, self-care, and complex decision-making. All of which were lost during COVID. He became a shell. If you have any autism coping strategies post-COVID, we are all ears. It was hard on everyone, but for some it really was devasting, my kid being one of them.

Now, my child is open to exploring part-time work opportunities, not just for income, but to build essential skills like punctuality, teamwork, and following instructions. We’ve had to focus on personal health, creating routines around meal planning, exercise, and mental well-being. Decision-making, once a source of anxiety, is now practiced in small, low-stakes scenarios to build confidence for the bigger choices ahead.

The Concept Map: A Tool for Empowerment

Creating a concept map wasn’t just about identifying what was missed, it was about creating a tool for empowerment. It’s a way to say, “Yes, we missed some things, but YOU can address them now.” Not me, not us, not “here let’s take over and show you”, it’s a visual reminder for HIM that learning and growth are lifelong processes, not confined to a particular stage of life. This is his concept map for independence. You can always learn more, or something new. He will be using the map to guide his steps and to check off what he missed, not as a checklist to rush through, but as a flexible plan tailored to his unique journey. Each skill can be strengthened and is a stepping stone toward independence. It’s not about perfection; it’s about progress. Navigating adolescence with autism is just always going to be harder it seems. Revisiting missed developmental milestones isn’t what anyone wants to hear, but it’s what we have to do.

two people working on wood with a power saw
Carpenter Training

What This Journey Has Taught Us

Grace and Patience Are Essential: For others and ourselves. It’s easy to feel regret for what was missed, but we’ve learned to extend grace to ourselves and each other. Life doesn’t follow a straight path, and that has to be okay for everyone.

Independence Is Built, Not Inherited: Independence doesn’t happen all at once; it’s the result of consistent effort and support.

It’s Never Too Late: No matter the stage of life, growth is always possible. Each step forward is a testament to resilience and the human capacity for change.

Step Away: We can step away and let him navigate difficult things. It is hard to watch the struggle, but the joy we see when he completes something he couldn’t do before is worth every second of the stress it took to get there.

Redefining the Timeline: Embracing Growth at Any Age

So we move forward as we always do. This journey might look similar to others but it is uniquely ours. It’s not about rushing to meet societal expectations of independence but about building the skills and confidence my child needs to live a fulfilling, self-reliant life. The concept map is just a visual reminder, a truth in that it’s never too late to go back, fill in the blanks, and move forward with purpose. Regardless of what you are facing. People do go to college at 60, people can choose to learn to drive at 29, and I have changed careers more times than I can even mention. The point being, that we as humans, can always learn new things.

Life often feels like a whirlwind, especially when recovery, parenting, and the demands of everyday living collide. For our family, the path has been far from linear, filled with unique challenges and hard-won victories. Now, as my child is almost legally an adult and longs for the independence that adulthood promises, we are uncovering more and more pieces of the puzzle that were missed along the way.

When B was diagnosed, we were told there was a finite “window of opportunity” to help him reach his potential. And we believed it and went into overdrive because as parents, we want to do whatever it takes for our children. But looking back, it’s clear that this was more than just flawed advice; it was part of an industrial complex built off the backs of kids with disabilities. An industry that markets hope to families while reinforcing the insidious belief that our kids will never make it on their own. The truth? There is no “window of opportunity” and it doesn’t close. Life is dynamic, and progress isn’t confined to a specific timeline. Each day brings new opportunities to learn, grow, and celebrate. So on we go. Our next chapter is being written.

Download the Free Concept Map for Your Journey

If you feel it will help you and your family. I wish I had understood this years before I did. I wish I could have fast-forwarded to now and then gone back to do it the right way. I will never have that chance, but if you are just starting out, you do. You have the chance to connect with others who have gone ahead, I urge you to pay attention to their stories, it may give you a roadmap to rewrite yours before you find yourself where we are now. Download the free concept map we created to help identify and address missed developmental milestones. Empower your young adult with the skills they need for independence.

Skills roadmap for independence Download:

[embeddoc url=”https://lovingthespectrum.com/wp-content/uploads/2024/11/concept-map-autism-independence-1.pdf” download=”logged”]

Psilocybin

Psilocybin and Mental Health: Navigating Therapeutic and Legal Landscapes

Psilocybin, the psychedelic compound in “magic mushrooms,” has garnered attention for its potential in mental health treatment. This naturally occurring substance is being explored for its therapeutic benefits, particularly in areas like treatment-resistant depression, anxiety in terminal illnesses, addiction, and post-traumatic stress disorder (PTSD).

Therapeutic Potential of Psilocybin

  • Treatment-Resistant Depression: Psilocybin shows promise in alleviating symptoms in individuals who have not benefited from conventional antidepressants. It has been associated with significant, lasting improvements in mood and well-being.
  • Anxiety and Terminal Illness: For those facing end-of-life distress, psilocybin can offer relief, bringing a sense of peace and enhanced quality of life.
  • Addiction Treatment: Studies suggest psilocybin may help break the cycle of addiction, including alcohol and tobacco dependence, by fostering a change in perspective and promoting introspection.
  • PTSD Relief: Psilocybin has potential benefits for PTSD sufferers, helping to process traumatic memories and reducing symptom severity.
  • Spiritual Experiences: The compound is known for inducing profound spiritual experiences, which can be transformative, enhancing a sense of connection and personal insight, and contributing to mental health recovery.

Caution and Considerations

While the therapeutic promise of psilocybin is compelling, it is crucial to approach its use with caution. Individuals with a history of psychosis, schizophrenia, or related conditions should be particularly careful, as psychedelics may exacerbate such conditions. Psilocybin therapy should only be considered under the guidance of qualified professionals in a controlled setting. Who shouldn’t take Psilocybin? It’s good to be aware of who shouldn’t take these therapies and compounds if they meet certain criteria.

Legal Landscape

The legality of psilocybin varies globally. In the United States, it remains a Schedule I substance federally, though some states and cities have moved towards decriminalization or medical use approval. In Canada, it’s permitted under special access for end-of-life care and specific medical conditions. Countries like the Netherlands, Jamaica, and Brazil have differing levels of regulation and acceptance, from legal truffles to more lenient policies on psilocybin use.

Navigating Legal and Therapeutic Pathways

For those considering psilocybin for mental health, it’s vital to stay informed about the legal status in your region and seek professional medical advice. The landscape of psychedelic therapy is evolving, and understanding both the potential benefits and legal constraints is essential for anyone exploring this option for mental health recovery.

Psilocybin offers exciting possibilities for treating various mental health conditions, but it must be approached responsibly, with awareness of legal restrictions and potential health risks. Consulting with healthcare professionals, and experienced guides, as well as staying informed about local laws are crucial steps in safely exploring the therapeutic potential of psilocybin.

Navigating Life’s Inescapable Realities

Embracing the Unchangeable:

Navigating Life’s Inescapable Realities

I’m quite an introspective soul. My mind is a constant whirlwind of thoughts; it rarely takes a break. It’s as if I have a brain that’s forever delving into rabbit holes. In the midst of this ceaseless mental activity, I often find myself deeply immersed in contemplation, examining the intricate tapestry of our lives.

As the years go by, these moments of reflection have become more consistent, and weirdly less profound. It’s becoming increasingly clear to me just how little I truly understand. When I was younger, my naive self believed in life having a profound purpose, in absolute positivity, and in giving the universe what it needed to reward me with all I imagined possible. Now I believe, life has a funny way of showing you what you didn’t know you needed to know. Life’s fragility and unpredictability are more apparent than ever, reminding me that control over it is a fleeting illusion. This realization is having a curious effect on me: the more I learn, the more I feel compelled to seek out new knowledge. It’s as though I’ve stumbled upon the profound truth that actually I know nothing at all. My foundation and trust in what I thought I knew has shifted. Maybe it’s an age thing, or a shaped-by-circumstance thing (you know that pandemic thing), or a reaction to everything and all that has gone before and led me to this point, I am not totally sure.

In reality, it’s not uncommon to feel dissatisfied with certain aspects of our existence, yearning for change, yet grappling with the inescapable truth that some things are beyond our control. This paradox is a universal human experience, one that I, as a British expat living in America, working in mental health, and running an online business, am intimately familiar with. My life is a complex interweave of challenges, illness, wellness, lack of resources, time, energy, responsibility and change. All of which seem out of my control or at the very least (or best) minimally within what I can control.

The yearning for change can be overpowering at times. We might dream of a different career path, yearn for a change of scenery, or desire a more fulfilling relationship. These desires often come from a place of genuine longing and the belief that life could be better, more meaningful, or simply different. However, the harsh reality is that not everything can be altered to align with our desires. It has taken many years for me to learn this lesson.

FIRST ACKNOWLEDGE WHAT WE CAN’T CHANGE

One of the most challenging aspects of life is acknowledging that some circumstances must be endured. This endurance isn’t born out of complacency or resignation but rather from a profound understanding of love, responsibility, necessity, and ethical considerations. Let’s delve deeper into these facets of life and explore how they intersect with our yearnings for change. For me, the 5 reasons why are below. Yours may be different, but for me, these are my driving forces.

  1. Love: Love is a powerful force that can both inspire and confine us. We may find ourselves in situations where we deeply care about someone, be it a family member, friend, or partner, and their needs or circumstances tie us to a particular place or situation. Their needs are greater than ours OR their ability to access their solutions is over and above what they can handle.  This love becomes a tether that keeps us grounded, reminding us that some sacrifices are worthwhile for the sake of those we hold dear.
  1. Responsibility: Responsibilities come in various forms. It could be the duty to care for aging parents, the commitment to a long-term project at work, and for us, the deep responsibilities that came with our brand of parenthood. These obligations have made it difficult to pursue drastic life changes, as all these require constant demands on our time, energy, and attention. Fulfilling these responsibilities of course is not only my duty to the commitment I made to my children but also comes with a sense of pride and purpose, even if it is these very same things that are limiting the ability to change other aspects of our lives.
  1. Necessity: Sometimes, change is simply not an option due to financial constraints or other pressing needs. Financial stability, for instance, is a necessity that many of us cannot compromise on. While it can be frustrating to feel financially tied down, it’s a reality we must face and navigate as best we can. Those groups that advocate for mold toxicity and leaving with nothing, make so much sense but I just do not see that fitting into the all-encompassing reality of my life. With Grandparents and children and work and mortgages and financial obligations, it seems impossible to do either. Stay – stay sick but keep the balls in the air until we physically can’t any longer, or create that void and chaos by allowing everything to collapse and burn around us. I know the latter option would ensure my children did not survive so that alone answers that question.
  1. Obligation:  Obligations may arise from commitments we’ve made to our communities, organizations, or even ourselves. We may have promised to support a cause, complete a degree, or maintain certain standards of integrity and ethics. These obligations can guide our decisions and limit our ability to make radical changes. Again, see the financial points above, but more, I feel a sense of “must” remain consistent for my kids, for my spouse, I believe they deserve nothing less from me.
  1. Ethical Reasons: Our ethical principles and values play a crucial role in shaping our choices. Sometimes, the desire for change conflicts with our ethical beliefs. For instance, leaving a job that provides for our family, even if it’s unfulfilling, can be a moral dilemma. We must grapple with the ethical dimensions of our decisions and weigh the consequences they may have on ourselves and others. I find myself grappling with this constantly.

EMBRACING CHANGE AND WAYS TO MOVE FORWARD

While it can be discouraging to feel trapped by these factors, it’s somewhat essential for my mental well-being I continue to remind myself that not all is lost. My capacity for change isn’t limited to external circumstances alone; it also extends to my internal mindset and perspective. As this is currently my only option for change (internal rather than external) I have been rabbit-holing this for a while. Here are some strategies that I have found to help navigate the complexities of wanting change while feeling obligated and forced to honor my current commitments:

  1. Embrace Mindfulness: This was so annoying to me at first. I was constantly thinking: “Shut up about your stupid mindfulness people. It doesn’t change a thing!!” Practicing mindfulness allows us to accept our current circumstances without judgment – allegedly anyway. It’s supposedly a powerful tool for finding peace and contentment within the present moment, even when we yearn for change. I am trying. I am definitely not there yet. I am not. But I have shut down the voice and started to try to appreciate the idea of acceptance. I think for me, it would be considered radical acceptance right now more than mindfulness, but I am on my way at least.
  1. Have Realistic Goals: While some changes may be out of reach, others can be pursued gradually. Break down desires for change into smaller, manageable goals. This gives you a sense of progress and control. I have done this. I have accepted that my situation is what it is. I am making goals to move things forward. I am even looking at new projects to create opportunities for community-safe living for my oldest. I have an idea for a college-type campus for living. A place where there are safe apartments, a centralized eating place, firepits, and community, but peer support and services to aid our not-quite-ready-never probably-able-but-should-be-afforded-an-opportunity to live independently adults. That idea is currently percolating in my mind and not sure if I should file that under “realistic goals” but I am not a small thinker so, let it be known I also dream of winning the lottery.
  1. Seek Support: Reach out to friends, family, or a therapist to discuss your feelings of dissatisfaction and the constraints you face. They can provide valuable perspectives and emotional support. My spouse and my friends ground me. They get it. No judgment. No expectations. No rudeness or mocking. They are solid. Without them, what do I have?
  1. Find Joy in What You Have: Cultivate gratitude for the aspects of your life that bring you happiness and fulfillment. Focusing on the positive can ease the burden of unchangeable circumstances. I want to add the eye roll emoji here, but I won’t. I am again, going to continue to try. It is hard some days, but then I just let go and hug a chicken. Pure joy is available in that even when all else seems hopeless and lost.
  1. Explore Creative Solutions: Consider alternative ways to incorporate your passions and desires into your current life. This could involve pursuing hobbies, volunteering, or finding new outlets for self-expression. Or building housing solutions for semi-adult-adults, or hugging chickens. I am good with creative solutions. My life revolves around being flexible and creative. This is one skill I can say I embrace fully.

Really this human experience is a patchwork quilt woven from a myriad of desires, expectations, responsibilities, abilities, and ethical considerations. I can’t walk away from those I love, I can’t rob a bank to fund our lifestyle changes so, here we are. While we can yearn for change, we should also recognize there is some beauty in lessons learned by enduring and embracing the unchangeable aspects of our lives. We have to create what we live. Like restoring a tumble-down farmhouse. It’s a delicate balance, one that requires introspection, resilience (I hate this word but here it is sort of appropriate), hard work, hard choices, love, and a deep appreciation for the complexities of our existence. I try to remind myself that life’s most profound transformations often begin within the heart and mind, even when the external world remains unchanged. This is where my most important and intense learning has often been crafted, and feeds my desire to continue learning to thrive not simply to just exist. Who knows where we will be next year or next week but for those who don’t know me, I can say, I don’t quit, I never give up, I never stop seeking. Maybe one day, life will mean more than 42 and a dead fish.

Reddit: The meaning of Life, the Universe and Everything. (Hitchhikers Guide to the Galaxy)
In the ASCII Language (computer language), 42 is an * or “Wildcard”  The greatest computer ever built was asked what the meaning of life is and it literally told everyone in ITS language that “Life is what you make it”

Now Go, make life “it”.

Complex Medical Conditions and Bankruptcies

Medically Complex?

That Costs Money, a LOT of money

Everything costs money, we get that but when we look at complex medical conditions and bankruptcies, we know, having a chronic condition costs more money than most can imagine.

Everything has a price, everyone deserves to make a living, all should be compensated for their experience and genius. We understand and support these ideas, of course, this is America after all. But … (pity party warning trigger)

When you are faced with [Read more…] about Complex Medical Conditions and Bankruptcies

How to End the Autism Epidemic – A review

How to End the Autism Epidemic

J.B. Handley

I am privileged and excited to be able to preview the groundbreaking book (How to End the Autism Epidemic) before it hits the shelves in the next day or two. While we have lived a life with autism and endured the confusion doctors have around autism and the nuances of the medical needs of children diagnosed for many years, we are now in a place where our child has recovered enough for the autism diagnosis to only ever to be hinted at, no longer underscored.

While writing that intro was easy, the reality of living with autism is not. Recovery is tenuous and it has taken many thousands of hours, countless interventions, extreme diet changes, medical tests, truckloads of cash, complicated supplement regiments and many, many, many, strange looks and weird conversations to get us here. So even though we do feel lucky the hard work has paid off, our child still has a diagnosis of post-infectious encephalitis.

However, this really is a much better place than when [Read more…] about How to End the Autism Epidemic – A review

Subscribe for the latest updates on our Journey Back to Health. What to expect when encephalitis becomes an unwelcome visitor in your home!

We promise to never sell, barter, share or trade your information, “Namaste”.

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