Tag Archives: Adulthood

Autistic Adults and Independence

I skipped a day of the September blog challenge because I was at my parents’. I had a good time. Today I came down with a cold, so am not really in the mood for writing, but I’ve got to keep up with the blog anyway. Besides, I just have to write my own spin on autism and independence, which Pam Byrne wrote an interesting post on.

Pam is the mother of an autistic adult with signifcant care needs. Though I am probably more capable in some ways than Pam’s son Alex, I am an autistic adult with significant care needs. I used to also be an autistic advocate, fighting for the rights to proper care and services for autistic adults. I always said autistics should be allowed to live and work in the community. It took myself being institutionalized to learn that society isn’t prepared for that. Of course, we should fight to get society prepared, but not every autistic person or parent of an autistic person has the resources and time and energy to do so. I bet most do not.

I remember back in 2010 or 2011 reading some research that said most autistic people attain a relatively normal level of independence, but do so around ten years later than most neurotypical people. I do not remember whether the research included autistics with co-existing intellectual disability or other additional needs. Even if it did, there still will be a significant number of autistic adults who do not reach expected levels of independence. For example, as Pam also says, the unemployment rate among autistics is about 70 to 80 percent. You could again put this down to discrimination. I won’t. After all, even the most willing employer could not employ me.

Maybe if I’d gotten early autism intervention, I would’ve been more independent than I am now. Maybe. Maybe not. Maybe it wouldn’t have made a significant difference, because my biggest problem is not a lack of practical skills. It is the fact that it’s not safe for me to be without access to support.

Of course, we need to teach autistic children and adults the skills to become the best they they can be. However, there are some skills some autistic people will just not learn. We could advocate for more applied behavior analysis training for older children and even adults with autism. I won’t. I don’t have the energy to go into all the things that are worng with ABA. Let me just say that I for one am completely overwhelmed with intensive skills training. Instead, we need enough supports to make sure autistic people can live a fulfilling, satisfying life.

Everyday Gyaan

Letter to My Baby Self

A few weeks ago, I discovered the Tuesday at Ten linky. This is a weekly linky that starts on Tuesdays at 10:00 AM, but you can link up posts throughout the week. Unfortunately, I was just a bit too late for that week’s prompt and the one the week after didn’t appeal to me. This week’s prompt is “If I could write a letter to the past me”. Having written many letters to myself in the past or future, you’d think I didn’t feel inspired to write one again. You’re wrong. I love writing letters that reflect on my life experience and the wisdom I’ve gained from it.

The challenging bit is to myself at what age I’d like to write a letter. I wrote a letter to my twelve-year-old self already. I have written a poem for my baby self as well. Let me make a twist on these two previous posts and write a letter to my baby self. She wouldn’t be able to read it, but isn’t that the case with any letter that requires time travel to be delivered?

Dear baby self,

Sometimes, in my dreams or daydreams, I see you. You were just born, June 27, 1986. The name tag on your incubator side says “baby”, since Mom and Dad didn’t have the time to think of a name before Mom went into premature labor. That’s what they’ve told me.

Let me tell you who I am. I am you, but older. I am 29-years-old now. Isn’t that a big number? Ha!

As you lie there in the incubator, Tigger the stuffed tiger by your side, I want to remind you that you are cherished. I don’t have Tigger now – he is probably at Mom and Dad’s if he hasn’t long been thrown away -, but I do have two other stuffed animals. One is Wally, the whale I got when I got home from the neonatal unit. Wally will forever be a reminder that I survived neonatology. I am here to write to you, because YOU survived.

The other one is an unnamed stuffed cat. I got it at an age when I thought I was too old for stuffed animals. I was almost nineteen and graduated from high school. The cat will forever be a reminder that I am now an adult, old enough to make my own decisions, and I don’t have to live up to anyone’s expectations but my own. You will still have to fight for your life. You will feel later on that you had to fight for so much more than just life. Whether this feeling is justified, I do not know, but you, or rather I can let go of it now.

You are now a grown woman. I remember, at the time I graduated from high school and got the stuffed cat, that this idea scared me. I feared being grown-up meant needing to prove myself to my family without my family’s ongoing support. In truth, being grown-up means letting go of the idea of having to prove yourself to anyone but you. Also, it doesn’t mean you won’t be supported anymore. I now have my husband and still have my family at a distance, after all.

Above all, I want to remind you, as well as myself, that you and i are good enough. We’ve proven ourselves by surviving so far and making it to 29. I hope you realize that you are loved.


Age Is But a Number?

Age is but a number, we so often hear. There are many, usually older people who say they never grew beyond age twenty-nine (or whatever age they like the most). Some people even say they remain children at heart.

I can relate to this, and yet I can’t. I can relate in the sense that I strongly embrace my inner children and teens and the fewer and fewer selves who are older than me. Right now, only my crafty self identifies as older than my chronological age.

Yet I am also very much aware that certain developmental expectations are tied to certain ages. I was made aware before I was nine-years-old that, by age eighteen, I’d be leaving the house. My father jokes that the family cat should earn his high school diploma if he ever turns nineteen. The cat is only thirteen, but you get the idea. Even cats need to conform to developmental milestones, so people certainly.

Of course, in the privacy of my own room or even with my husband present, I can be childish all I want. I for example bought a Barbie doll when one of my inner children was particularly active. Nothing’s wrong with that. On the other hand, the only reason I can go on forums that are commonly visited by teens, is that I’m female. Had I been male, I would’ve been seen as a pedophile. (For clarity’s sake: I don’t go on forums that have a clear age limit or ever lie about my age, and I have absolutely no intention of exploiting anyone.)

My age is not only significant in highlighting the inappropriateness of my embracing childlike roles, but also in making clear that I’m missing out on adult milestones. I never spent much time in college, let alone graduating it, though I’m hardly technically a yooung adult anymore. I never held a job, even a summer job. I am not pregnant, let alone a mother. I hardly ever lived independently, which even on sites for people with autism is seen as a rite of passage into adulthood.

I have written about many of these issues before. I grieve the loss of my child identity (and an inner child is no excuse). I also grieve having missed out on adult milestones and likely missing out on even more as time goes by. Age is but a number, but you can’t just act whatever age you feel, at least not in public. That’s with good reason, of course, but it is still somewhat hard to deal with sometimes.


Parents’ Dreams and Expectations for Their Disabled Children

Today, Ellen from Love That Max wrote about wondering what her disabled son would do when he grows up. I wrote about this last week. As I said then, I knew early on that I’d become a normal or even above-average college student and later employee when I grew up. Up till age eighteen at least I didn’t show any inkling of thinking I’d not meet this expectation. I know that I had worries at night about burning out at my first job (as a teacher) and returning to the workforce several years later at an entry-level administrative position. I didn’t share these thoughts. I shared my dreams of going to the United States on a college exchange student visa and never returning. Cause, you know, with affirmative action and all my minority statuses, I’d surely get a green card. Sure!

Ellen shares her son’s similarly big dreams. Max will become a fireman when he grows up, and not only that, but he’ll live at the fire station. Ellen knows this is an unrealistic dream, but then again, maybe not. She refers to a news story about a man with an intellectual disability practically living at a firehouse. In similar ways, my parents probably knew the moving to the U.S. dream was unrealistic, but they tried to keep a positive attitude. I appreciate that

What I also want to say I appreciate, is that Ellen doesn’t turn Max’s big dreams into expectatiosn for him. I don’t know whether my parents truly believed I could go to the U.S., but they made it seem lke they did and they were half-expecting me to actually pursue this path.

With disabled children, more so than with non-disabled children, you need to walk the fine line between not encouraging them enough to dreaam and follow their dreams, and turning their biggest dreams into your lowest expectations. I like it that my parents looked up the subsequent cities I was obsessed with living in once in the United States and encouraged me to learn about these places. That is encouraging a child to dream. However, I’d have liked it if my parents helped me do some realistic planning. This doesn’t mean saying: “Girl, you’ll go live in an institution and do day activities there.” I’m pretty sure that, with the right transition planning from me, my parents and the staff at the training home I lived in for eighteen months, I could’ve come far closer to my dreams than I’m now. Then again, I’m relatively happy now – happier than I was when dreaming of the United States.

One last thought, which I’m struggling with. Your idea of success as a parent is not the only conceivable norm. I know that as parents, you have limits too, and, particularly if your child is above eighteen (or 21), you have a right to these limits. You don’t have an obligation to care for your child past this age. In this sense, I can only hope that parents of disabled children have an appropriate transition plan in place before their child turns eighteen. I can only hope they accept their children no matter their path to success, but I still understand that this is not something a child, disabled or not, can enforce.

Worrying About Your Disabled Child’s Future

Today, I came across a post by the mother of an adult with Down Syndrome on the topic of birthdays and more specifically, crying on your child’s birthday because you’re worried about their future. I left a lengthy comment, on which I want to expand here.

My parents probably cried on my birthdays too. At least they were usually emotional. I don’t know whether they worried about my future, but they sure thought about it a lot. I survived the neonatal intensive care unit with several disabilities, some of which wouldn’t be diagnosed until many years, decades even, later. I had had a brain bleed, retinopathy of prematurity, and a few other complications. My parents knew soon that I would be severely visually impaired, possibly blind. I don’t know whether they knew or cared about my other disabilities.

My parents started thinking about my future early on. They started communicating to me about my future early on. At age nine, I knew that I was college-bound and had to move out of the house by age eighteen. I don’t know whether it’s normal to plan so far ahead for a non-disabled child. My parents didn’t do this with my younger sister as far as I know.

It is understandable. With non-disabled children, independent living and college or employment are the default. Positive parents, we’re told by the disability community, keep the bar of expectations high, so they expect the same from their disabled children that they do from their non-disabled children. To be honest, I hate this attitude, which sends the message that to be successful is to meet up to non-disabled standards. We aren’t non-disabled, for goodness’ sake.

Let disabled children be children please. I understand it if parents worry about their child’s future, especially in societies that don’t have socialized health care and if the child is severely disabled. I understand that these worries get somehow communicated to the child. There’s no way of preventing this. What you can do, is minimize the worrying as much as posoible and turn it into positive but also unconditionally accepting encouragement.

“You’re an Adult.”

Last Tuesday, I went to the dentist. I have trouble taking care of myself, including brushing my teeth. I can’t remember to do it regularly, and when I do remember, I find it hard to motivate myself because I’m sensitive to the feel of the toothbrush and the taste of the toothpaste. The dentist gave me a mouthwash with a relatively neutral taste and told me to rinse with that after toothbrushing. I am allowed to brush my teeth without toothpaste for now to get used to the feel of the brush and into the habit of brushing first. The dentist instructed the nurse who was with me, a nurse from another ward, to tell the staff they needed to actively remind me to brush my teeth. The nurses on my ward, however, didn’t feel like this, saying I’m an adult so should take responsibility for my own self-care.

The phrase “you’re an adult” is uttered time and time again when I (or other patients, but I’m speaking for myself now) require help or display a problem that is not normal for a healthy adult. Saying we’re not healthy is not an excuse, because what are we in treatmetn for then? A nurse told me yesterday that if I had a low IQ or had been floridly psychotic, this would’ve been an excuse not to be able to remember my self-care. As if people with an intellectual disability or psychotic disorder are not adults.

The thing is, whether you’re physically or mentally capable of taking care of yourself, does not determine whether you’re an adult, and whether you’re an adult, does not determine your respectability. The idea that an adult should be capable of caring for themself, is ableist. The idea that an adult (at least, one who displays adult abilities) is more respectable than a child, is not just ableist but ageist too.

Honestly, I don’t care whether I’m an adult. I don’t care whether my abilities reflect my age. I care that I’m an individual and have individual needs. In some areas, I’m self-reliant. In other areas, I require practical care. In others, I require guidance. None of this makes me deserve less human dignity. Similarly, children and persons of any age with intellectual disabilities deserve as much human dignity and respect as a healthy adult does. We treat them differently, of course, but that is because they have different abilities, difficulties and needs. A child is different from an adult, and an adult with a disability is different from a non-disabled adult, but that doesn’t make them a child. Everyone is an individual who deserves to be treated like an individual with dignity and human rights.


In the U.S., May is the month of graduation. In the Netherlnds, high school students are currently in the midst of their final exams, which will determine whether they will graduate or not. I still have nightmares about final exams, even though I graduated grammar school with above-average grades in 2005.

As Ginny Marie points out in her spin cycle prompt for this week, graduations can mean many things. People can graduate from preschool, elementary school, high school or college, but they can also graduate from certain life events or habits. For me, high school graduation marked my graduation from pretending to be normal. Two weeks before the graduation ceremony, with me already having had my final exams, I E-mailed the student counselor to let her know I wasn’t going to Radboud University to study English after all, but was instead going to my country’s blindness rehabilitation center.

The high school graduation ceremony was okay. The principal had planned a lot of pooha about how great my school had been to accept a blind student – I was the first and so far only blind student at this school – and how wonderfully they’d helped me graduate. When I heard of these plans, I was pissed. I argued that I didn’t want to be singled out. This was one reason for my objection. Another was the fact that grammar school had been a bad experience right from the start. In September of 1999, I wrote in my diary that I knew I’d rather graduate a grammar school in six years than a low-level special education high school in four. I don’t know how much of that was truly wanting to, and how much was needing to in order to please my parents.

High school graduation marked my graduation from doing what my parents and teachers wanted me to, which was (or seemed to be) pretending my invisible disabilities didn’t exist. Even though it was my high school tutor who had arranged the initial intake interview at blindness rehab, he half assumed these people could push me to go to college better than he could. In reality, they ended up recommending the basic rehab program. My parents were initially not amused, because the program lasted only four months, but they eventually accepted that I needed to work on myself first before going to university.

Even though I graduated from parent and teacher-pleasing, I didn’t graduate from dependence. Till far into my stay at the acute ward in 2008, I did just do what my social worker or doctor wanted me to. Even though this lessened a bit when I got to the resocialization ward in 2009, I’m now at once at the opposite end of the pendulum, defying my staff constantly, and at once I’m still dependent on them. I ultimately end up doing what they want me to, after all.

Now I know that no-one is truly independent. Then again, parent/child relationships, schools and institutions instill more dependence on the child, student or patient than does ordinary adult life. Next year, it’ll have been ten years since my high school graduation. Will I move towards true interdependence then?