For as long as I can recall I have been quite averse to certain foods. I hated the consistency of tomatoes, the texture and smell of bananas, and the way yogurt was just smooth. I just put it down to disliking certain foods — that was how my family saw it, too.
I would insist my sandwiches be made without butter because I didn’t like the coating on my tongue after eating it. I loathed touching raw meat, particularly chicken, because the smell drove me up the wall, and the texture felt almost slimy.
Jelly, processed meats, and anything with multiple components, like trifle, made my skin crawl. It was sensory overload and I couldn’t seem to process it. Some days I would get frustrated with myself because I would suddenly be overwhelmed even by foods I did enjoy, like avocado, eggs, or cheese.
I couldn’t understand why it was such an uphill battle just to eat something. The sense of overwhelm was so severe that I would unconsciously avoid eating after experiencing a reaction to a particular food.
I was diagnosed with ADHD in my mid-20s, and up until that point had no idea I was neurodiverse. Suddenly everything made sense — difficulties at school, being too talkative, struggling with focus and concentration, overthinking and anxiety, so many elements of my life made sense.
I had no idea just how severely ADHD had impacted my life, and how it affected my everyday experience. It was both a relief to finally have an answer for so many things I had experienced and incredibly frustrating and painful because I felt resentful about the difficulties I had faced.
I was upset because had I known sooner, I would likely have had better tools to deal with the disorder.
My therapist and I discussed my issues with sensory overload, which manifested in multiple ways — sensitivity to lights, loud sounds, crowded spaces, and even textures of my clothes and blankets.
It dawned on me that my issues with textures, smells and consistencies in relation to food could absolutely be due to ADHD. I decided to consult the internet, and found out about avoidant restrictive food intake disorder (ARFID), an eating disorder associated with those with ADHD and autism.
The research indicated it was similar to anorexia but with a key difference — people with ARFID have no interest in body weight, size, shape, or body image, which is commonly seen in people who deal with anorexia.
I had no idea that ADHD could play any kind of role in the issues I had faced with food all my life. I couldn’t really understand it or find an abundance of resources for the lay person about the connection between ADHD and disordered eating.
I tend to worry and become anxious a long time before meals, when I go to new restaurants, or visit someone else’s home for a meal.
I worry that the texture, scent, consistency or even appearance of a dish may unsettle me to the point of not eating for hours on end.
‘It is so rare to hear about it‘
My therapist and I have discussed the issue at length and thankfully, as a neurodivergent woman herself, she truly understands and is able to speak and relate to me in a way that is comforting. Her recommendation to work with an occupational therapist to deal with the sensitivity has been helpful.
ARFID is exceptionally difficult to deal with because it completely shifts your life, and makes it difficult to socialize without being hyperfocused on the gaze of others. Generally speaking, people have no idea about ARFID so it can seem like someone is just being difficult or a picky eater, which is not the reality.
I wish I could just complete a meal without quitting because the smell was overwhelming — it is just not that simple to navigate.
It is a part of ADHD that is incredibly hard to navigate, it is difficult to explain to people. It is not something we talk about often when we speak about ADHD.
It is so rare to hear about ARFID that the general public seems puzzled when I attempt to explain my eating habits and their link to ADHD.
It isn’t seen as one of the main symptoms to look out for, and in my experience, it took multiple individuals commenting on my weight loss, and my own realization that I avoid multiple foods and often skip meals because I am overwhelmed by the sensory overload to become conscious of it.
After a significant battle with attempting to force myself to eat and just ending up overwhelmed and physically unwell, I decided to reach out to experts to discuss the experience I had been having.
My issues with eating and sensitivity around particular things seemed to be heightened when I was overwhelmed, in general. It seemed to exacerbate the symptoms.
One of the ways in which I have been able to manage my situation has been by consulting experts, prepping meals beforehand so I avoid feeling overwhelmed, and working with an occupational therapist to manage my sensory issues.
Neurodivergence is a complicated issue and one that is multifaceted. Our experiences would likely be easier, and our symptoms managed sooner if regarded holistically and not just as focus- and hyperactivity-related issues.
This would not make sensory issues go away entirely but it would provide the tools to better manage these sensitivities.
Assessing what situations I am fairly comfortable with and the things that distress me has allowed me to open up in a safe environment and slowly work on exposure therapy.
We need to have conversations about ADHD that are wide and varied. The condition isn’t the same for everyone, and it would help many if we viewed it holistically and treated the multiple parts of this disorder.
Having conversations about ADHD and comorbidities like ARFID could be life-saving to some, it could provide answers, and even encourage others to seek professional help for their disordered eating before it causes long-term effects on the body.
Through My Eyes: Empowering my son to negotiate the 'autism cliff,' enter adult life
Like many parents with young autistic children, my focus suddenly changed when my son received the diagnosis of autism spectrum disorder (ASD). After a long and arduous diagnostic process, I shifted from wondering if he had autism to searching for the services he needed to learn, grow, and manage autism-related challenges. This included in-home therapy, school-based services, and nutritional therapies.
Because of the time invested in researching and implementing various treatments, and the effort invested in advocating for my son, I didn’t have the mental bandwidth to think too far into the future.
But as he grew, I realized that even though he had experienced incredible progress throughout his journey, the challenges associated with autism would likely not end when he became a legal adult. This realization made planning for his future a new and urgent priority.
Autism advocates, including the Autistic Self Advocacy Network (ASAN), have called for a change from “Autism Awareness Month” to “Autism Acceptance Month” to encourage inclusion and increase support and opportunities for autistic individuals.
Like many autistic students in the United States, my son’s educational journey from pre-school to high school graduation was mapped out with an Individualized Educational Program (IEP). An IEP is a legally binding document developed and instituted when a child meets the public school’s criteria for specialized education.
This document outlines the child’s needs and designs an educational program to meet those needs best, whether through speech and language therapy, occupational therapy, or the addition of support people like paraprofessionals to assist the child throughout the day.
With an IEP in place, a child’s educational journey does not have to end at 18. Instead, the young person and their parents can decide to continue attending school up to age 21.
This 18–21 period is considered one of “transitions”— and is designed to shift the young person from educational-centered to adult-oriented learning. Much of this includes teaching independent living and job skills.
In the United States, statistics suggest that 500,000 young adults with autism will transition into adulthood over the next 5 years.
Unfortunately, many schools don’t have the resources to develop transitions programs that fully address the needs of autistic students entering the adult world.
A Centers for Disease Control and Prevention (CDC)
survey using parent-reported data from the National Survey of Children’s Health found that autistic students were less likely to receive transition planning than children with other emotional or behavioral conditions.
Furthermore, even if a transitions program exists, it may not cover all the gaps in services that suddenly occur when the child reaches 18 years old. Parents often refer to this sudden loss of services as the autism cliff.
When faced with a sudden reduction or loss of services, parents of autistic children must build a bridge over that gap. And they may not always have the information and resources needed to construct it, which leaves them unsure about what to do next.
Fortunately, my son’s experience has been different due to the charter school for autism he attends. His school, Lakeland STAR School/Academy, was created in 2018 by a group of dedicated parents, educational professionals, and community members and supported by generous donors. STAR serves diverse learners in grades 7–12 and has a transitions-focused curriculum.
However, because
To address this need, Lakeland STAR is now developing a transitions center with the help of community-based organizations, including Aspirus Health, Lakeland Union High School (LUHS), the Howard Young Foundation (HYF), and the HYF Women’s Legacy Council.
Scheduled to open in the fall of 2022, the center will offer transitions-based education, including independent living skills, job skills training, and related services. The new center will help my son and other autistic young adults bridge the gap over the autism cliff and into the adult world.
Still, through my experiences, I’ve learned that transitioning is more than just transition programs. It also includes critical legal aspects of becoming an adult regarding healthcare and finances.
Depending on the level of support the young person needs, these legal aspects may include deciding whether to pursue legal guardianship, financial power of attorney (POA), or power of health (POH). In the U.S., a parent must complete these documents before the young adult’s 18th birthday.
Over the years, I’ve heard many parents and caregivers explain the incredible challenges of navigating finances and healthcare after their autistic child reaches adulthood. And this is especially true if there are no legal documents in place that allows parents to have some oversight in their child’s decision-making after they turn 18.
Legal documents may be necessary because autism often affects executive functioning, expressive and receptive language skills, and social skills — leading to unforeseen challenges in the adult world.
For example, executive functioning challenges may make it difficult for an autistic person to organize their finances and pay bills on time. This could lead to loss of housing or referrals to debt collection agencies.
Autistic individuals may also have a higher risk of exploitation and victimization from others due to social difficulties. Because of this, they could experience fraud or other financial abuse without essential legal safeguards in place.
Additionally, expressive and receptive language challenges could lead to miscommunication with authorities, resulting in unwarranted legal issues.
Challenges with healthcare can also occur. For instance, in the U.S., medical professionals cannot discuss an adult’s medical situation with parents or caregivers without guardianship or active power of attorney for healthcare. So, an autistic person may not have the support they need in a medical emergency.
Although autistic adults who need minimal support can often handle many aspects of adult life on their own, it’s not always easy to determine this by the time they turn 18. Therefore, it’s often in the child’s best interest to establish legal documents until support people can fully understand the young person’s abilities.
When faced with a sudden reduction or loss of services, parents of autistic children must build a bridge over that gap. And they may not always have the information and resources needed to construct it, which leaves them unsure about what to do next.
Fortunately, my son’s experience has been different due to the charter school for autism he attends. His school, Lakeland STAR School/Academy, was created in 2018 by a group of dedicated parents, educational professionals, and community members and supported by generous donors. STAR serves diverse learners in grades 7–12 and has a transitions-focused curriculum.
However, because
To address this need, Lakeland STAR is now developing a transitions center with the help of community-based organizations, including Aspirus Health, Lakeland Union High School (LUHS), the Howard Young Foundation (HYF), and the HYF Women’s Legacy Council.
Scheduled to open in the fall of 2022, the center will offer transitions-based education, including independent living skills, job skills training, and related services. The new center will help my son and other autistic young adults bridge the gap over the autism cliff and into the adult world.
Still, through my experiences, I’ve learned that transitioning is more than just transition programs. It also includes critical legal aspects of becoming an adult regarding healthcare and finances.
Depending on the level of support the young person needs, these legal aspects may include deciding whether to pursue legal guardianship, financial power of attorney (POA), or power of health (POH). In the U.S., a parent must complete these documents before the young adult’s 18th birthday.
Over the years, I’ve heard many parents and caregivers explain the incredible challenges of navigating finances and healthcare after their autistic child reaches adulthood. And this is especially true if there are no legal documents in place that allows parents to have some oversight in their child’s decision-making after they turn 18.
Legal documents may be necessary because autism often affects executive functioning, expressive and receptive language skills, and social skills — leading to unforeseen challenges in the adult world.
For example, executive functioning challenges may make it difficult for an autistic person to organize their finances and pay bills on time. This could lead to loss of housing or referrals to debt collection agencies.
Autistic individuals may also have a higher risk of exploitation and victimization from others due to social difficulties. Because of this, they could experience fraud or other financial abuse without essential legal safeguards in place.
Additionally, expressive and receptive language challenges could lead to miscommunication with authorities, resulting in unwarranted legal issues.
Challenges with healthcare can also occur. For instance, in the U.S., medical professionals cannot discuss an adult’s medical situation with parents or caregivers without guardianship or active power of attorney for healthcare. So, an autistic person may not have the support they need in a medical emergency.
Although autistic adults who need minimal support can often handle many aspects of adult life on their own, it’s not always easy to determine this by the time they turn 18. Therefore, it’s often in the child’s best interest to establish legal documents until support people can fully understand the young person’s abilities.
For some parents in the U.S., especially those who support an autistic child with significant verbal communication challenges, guardianship is the answer to this legal dilemma. However, obtaining this level of legal oversight can be a complicated process.
Often, you need a medical professional to declare that the autistic young person is unable to make their own decisions and then go through a detailed court process.
In addition, becoming your child’s guardian involves managing their finances and medical needs as a separate individual. Other parents have told me that managing guardianship is like a full-time job, but most consider it a labor of love.
Still, for many autistic adults, an active power of attorney for healthcare and finances is adequate because it allows some oversight on decisions yet leaves individuality and decision-making intact. These documents are drawn up by a lawyer and signed by the autistic person soon after reaching the age of 18.
In my son’s situation, although he needs minimal support, he was welcoming of the idea of giving his father and myself the ability to assist him financially and medically when required.
This acceptance of help may be partly due to his self-awareness — something that began evolving soon after I was transparent with him about his diagnosis at a young age. I believe this knowledge has helped him understand himself better and more easily identify areas in his life where he may need more assistance.
Autistic individuals have many strengths that make employment or attending college more than possible. Still, research from 2017 suggests that
Still, a transitions program can help increase employment and post-secondary attendance for autistic individuals.
In my son’s situation, his school has helped by searching out job experiences in the community. However, these job experiences are slightly different than a typical employment experience.
For example, the employer is aware their new employee has ASD and will make accommodations to support their needs. In other cases, a job mentor will accompany the autistic employee when they start their job and slowly withdraw support as needed.
Fortunately, our community has been highly supportive of autistic employees. For example, no local business has turned down the opportunity to participate in the Lakeland STAR job experience program.
In addition to employment, attending college or a technical school may also be an option for my son. Like many autistic peers, he has specific interests and passions that can transform into a rewarding career. His happen to be history and the visual arts, such as filmmaking and creating documentaries.
However, just like neurotypical people, autistic individuals have diverse interests and skillsets. For example, some of my son’s schoolmates are interested in auto mechanics, computer coding, or the culinary arts.
Thankfully, post-secondary schools are becoming more accommodating to autistic students, making college a more attainable goal. However, I am just beginning to navigate this process, which includes plans to contact various visual arts and filmmaking schools to inquire about their autism-specific support services.
Statistics suggest that about 87% of autistic adults live with or have lived with a parent at some point in their life. Yet, even when living independently, some autistic adults still need support.
Because independent living requires many skills, my son’s father and I have begun the process of teaching my son things like doing laundry, paying bills, and shopping for and preparing food. In addition, his school’s independent living classes have addressed these skills, which will continue when he attends the new transition center.
Also, with the help of others, I was fortunate enough to acquire a small house close to me. This dwelling will eventually serve as my son’s home while adjusting to adult life and learning to live independently.
However, I realize that my son’s situation is not typical, as the fact remains that housing for adults with ASD is difficult to find. Therefore, future goals for our community include a plan for supportive housing that caters to people with special needs like autism.
As for me, my son, and his father — we are just beginning to build a bridge over the “autism cliff.” And so far, I’d say we have an excellent foundation to support its construction.
Still, because of the ongoing challenges associated with ASD, I am not sure this bridge will ever be complete. Instead, we may have to modify it as our son’s needs change.
Hopefully, someday soon, every autistic young person will have a well-defined path to cross as they transition into adulthood.
To be most effective, this pathway needs to include transition programs, expanded employment opportunities, and appropriate and supportive housing.
Although it seems like a momentous task, I have learned that it is possible. Especially with the support of friends, family, and community members dedicated to creating a world where autism is accepted and woven through the fabric of society — as I believe it should be.
Source - Medical News Today
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