17 Ten Things I Wish My Parents Had Known When I Was Growing Up

Amelia “Mel” Evelyn Voicy Baggs

You can’t put a price tag on freedom.

I’VE BEEN ASKED to write something from the perspective of a “high needs” autistic person. By which they seem to mean someone who needs a lot of services in order to survive. Which is a category I do fall into. I wish I could have written something a lot more thorough and in-depth, but in the middle of the time I should have been writing, I moved into a new apartment and my father died of cancer. I hope that will explain why this isn’t the best or most thorough writing I’ve ever done in my life. So, here are some things you should know about having a daughter growing into adulthood with “high needs” autism.

My name is Mel Baggs, short for Amelia Evelyn Voicy Baggs. I am a crocheter, a poet, a painter, a writer, a self-advocate, and an autistic person. I have multiple disabilities that can’t easily be teased apart from each other. Many of them run in my family. My family doesn’t really have non-disabled people in it, so I had the luck to grow up thinking that at least some degree of disability is normal. In the past I’ve needed a wheelchair to get around, but right now I can make it with a cane or crutches—sometimes without either. I was bedridden for six years with a combination of severe adrenal insufficiency and myasthenia gravis (or possibly hereditary myasthenia, but that’s splitting hairs). I use a keyboard to communicate. I have a lot of different assistive technology.

I was diagnosed with PDD-NOS (pervasive developmental disorder-not otherwise specified)/atypical autism at the age of fourteen; at least that’s what it said on paper. My doctor used the words “idiot savant” and “autistic.” But back in the 1990s, “autistic” could mean a life sentence to an institution, and he wanted to avoid that, so he used the mildest category he could get away with. We still had to fight to keep me out of permanent institutional placement, regardless. Sometime around 1999, my diagnosis was changed back to just plain autistic disorder, and in 2000, my diagnosis was changed to autistic disorder with catatonia. Not because I’d changed, but because it was no longer dangerous to have a diagnosis of autistic disorder and because my shrink had finally (thanks to a self-advocacy group I was part of) gotten hold of the paper “Catatonia in Autistic Spectrum Disorders,” by Lorna Wing and Amitta Shah.1

I live in my own apartment and am about to get a roommate because it’s getting harder to do things again. I have a good deal of services with people helping me out with every aspect of daily living. It doesn’t sound like much, especially when you know I’m unemployed. But when I was a teenager, I was planning out how to live in the woods as a hermit, to avoid permanent institutionalization. And when I realized that wouldn’t work, I was planning my own death. It was only after I was exposed to severely disabled developmentally disabled adults (autistic and non-autistic) that I was able to envision a future for myself. Now I am about as happy and well-adjusted as someone from my background can get, I think. I am happier and more well-adjusted than a lot of people who are more “independent” than I am. Nobody is independent. Everyone is interdependent on each other. That’s important to teach your kids, too. It’s important, in general, to teach them that there are all kinds of futures, that people can live without jobs, without being able to take care of themselves, and without having to be institutionalized (including in group homes). It is also important to know the following:

1. You may not always know she is high needs until she is put into a situation in which she can’t function.

In early childhood, I did lose my speech, but after a short delay, I regained something that looked like speech. I did reasonably well academically in elementary school, and I was generally on the honor roll. I both skipped grades and was held back grades at different times. I even went to a year of college when I was fourteen. I was mainstreamed up until I was diagnosed at age fourteen, and after that I either didn’t go to school, went to school in mental institutions, or went to school in special education programs that catered to people with a mix of psychiatric and developmental conditions. Then I went on to community college, where I did well for a year (which is more than I can say for my other attempt at college—I really felt good this time) but burned out again, and when I transferred to university, I couldn’t even make it to class.

I moved out on my own at the age of nineteen, where I discovered that despite being trained in daily living skills at a residential facility and mental institution, I pretty much could not implement any of these skills. It’s one thing to know in theory how skills work. It’s another thing to put them into practice with nobody guiding you or prompting you along the way.

Worse, I was losing skills, including speech, at an alarming rate. The more skills I had to manage on my own, the less energy I had to put into other skills, and the more behind I got. This had been going on since early adolescence, but it really picked up the pace when I moved out on my own.

2. Daily Living Skills training will not always work.

It only works if the autistic person in question has the skills and the cognitive and physical stamina to implement the training. A person can seem to do really well in training in a controlled setting but do terribly in real life, and vice versa. I was closer to the first sort.

3. A person who is unable to take care of themself does not have to live in any kind of institution, whether that be a group home, a large institution, or what I call “community institutionalization,” where all the features of an institution still exist, but instead of walking from building to building, the person is driven from program to program.

When I first moved out on my own, things were not looking good at all. I could do maybe one and a half daily living skills per day, on a good day, and most days weren’t good days. I could not clean up after myself. I urinated on the living room floor and in the front yard. I banged my head on the wall or with my fists for a large portion of the day. I couldn’t cook without starting fires, and I couldn’t reliably remember to eat. I couldn’t even remember there was food in the cupboards because I couldn’t perceive it directly through my senses, so it didn’t exist.

4. Some autistic people suddenly gain skills in adolescence, some people suddenly lose skills, and some do both. In people who do both, one will generally be noticed over the other, which can be harmful.

I’ve done a lot of digging through outcome studies to understand what happened to me. How I went from a verbal student on the honor roll to a special education student with only sporadic speech to a nonverbal adult who needs help with everything. And what I found surprised me.

It seems that between one-third and one-sixth of autistic people lose major skills in adolescence. Of those, about half will gain their skills back eventually and half won’t. All autistic people show traits of catatonia, but only some autistic people will show traits of what is now called autistic catatonia, a movement disorder (not a psychiatric disorder) in which autistic people develop an increase in catatonic traits, have periods of slower movement, loss of speech, and an increased dependence on external prompts in order to get things done. You can read more about it in Wing and Shah’s paper, “Catatonia in Autistic Spectrum Disorders.”

While there is one “expert” out there who rather aggressively recommends electroconvulsive therapy (ECT)for severe autistic catatonia, all the autistic people I know who have autistic catatonia and got electroshock either got worse or stayed the same. One of them almost died, and it took years for her to get her life and memory back again. One particular researcher who recommends ECT seems to be on a crusade to bring back ECTand normalize it again, because he only seems to research conditions for which ECT is traditionally used (severe catatonia, severe depression, etc.).

He was not receptive to feedback from those of us who actually had autistic catatonia; in fact, he was rude to us and made a lot of unwarranted assumptions about the severity of the catatonia. (One woman he argued with had been immobilized for months at a time, and he told her she just didn’t understand how bad it could be because some people froze for months at a time.)

Any kind of autistic person can get autistic catatonia. Whether they’re labeled Asperger’s, HFA(high-functioning autism), LFA (low-functioning autism), MFA (medium-functioning autism), autistic, PDD-NOS, or whatever. The only people who seem significantly more susceptible to autistic catatonia are people whose main social-relating style is social passivity. That means we will usually socialize when approached by others but that we can’t easily approach others ourselves. I was very socially passive as a child, and I ended up with autistic catatonia starting at puberty.

5. The more help we get, the more capable we are.

Many parents are made to fear that if they give their autistic children help, then we will get lazy and never learn to do anything for ourselves. While I’m sure that happens sometimes, it’s not usually the case.

Autistic author and artist Donna Williams often made the analogy of the straw that broke the camel’s back. Giving autistic people help in order to function better, by giving us services that allow us to live on our own if we wish, takes straws off our backs. The more straws you remove from our backs, the more capable we become. This is the exact opposite of what you’d expect if we were really as lazy as some people assume we are.

When I was first living on my own, the only help I got was physical prompting from my cat and verbal prompting from a woman I met through a self-advocacy group, over the phone. I spent most of my day totally unable to control my body. Either I was immobilized and couldn’t get started moving, or I was moving all over the place and couldn’t stop moving. The prompting saved my life, but I was still starving and living in a filthy environment.

Today, I get three shifts of services throughout the day and an overnight shift when I can press a button and have someone here in less than five minutes. I get some kind of assistance with every daily living skill you can imagine. This ranges from total assistance to physical prompting to get started (for instance, I would never brush my teeth on my own, but if someone hands me a toothbrush, I can do it just fine most of the time). Because of the extensive assistance I get, I am able to put in time to write, to crochet, to help other people, and to do all kinds of things I could not do when I was trying to do everything by myself.

6. There is no need, ever, for institutions. Don’t put your child in one.

Whatever you call them—ICF/MR (intermediate care facility for mental retardation, now known as intermediate care facilities for individuals with intellectual disabilities), ICF/DD(intermediate care facility for persons with developmental disabilities), group homes, residential facilities, private mental institutions, developmental centers, state psychiatric hospitals, or nursing homes— they’re all institutions, and they all have the same soul-crushing aspects to them. So do the “community institutions” I mentioned earlier, as well as what have been called “pseudo-utopian farm communities,” where parents build what they believe to be utopian group homes on farmland for their own children to live in for the rest of their lives.

There is nothing that can be done in an institution that can’t be done—and done better—in someone’s home. If there are no programs where you live for autistic people of all ability levels to live in our own homes (our own homes, not our parents’ homes, unless that’s really truly what we want) and get whatever assistance we need to do that, then you need to get busy making such things exist now, while your child is still young. I would not be living in my own apartment if Vermont self-advocates and parent-advocates hadn’t spent decades lobbying for community-based services, something I’m incredibly grateful for. I’ve gone to the legislature myself to tell them my story and urge them not to cut these services. I’ve had people from the state say, “Her services are so expensive, why is she being allowed to live on her own?” Those are dangerous words. You can’t put a price tag on freedom.

If you’re interested in this, in the United States, I would look into the Community Imperative2 (a declaration from Syracuse University supporting the rights of all disabled people to community living), all the different self-advocacy groups for people with developmental disabilities, ADAPT,³ and anyone else who seems to be making an effort to change things for disabled people in this country.

Unfortunately, I don’t have a lot of information on how other countries have done things. I just know that no matter where you are, institutions always do grave harm to those who live there, whether they can feel the harm happening at the time or not. Sometimes they’re the best of a bunch of terrible options, but they’re never good.

7. Think about what’s important.

There are a lot of things I am not likely to ever learn how to do. Or if I learn how to do them, my movement disorders will prevent me from applying that knowledge. So, if I’m going to put in the extreme effort it takes for me to learn and sustain a skill, it had better be a skill that makes me happier (like crocheting), not just a skill that makes things easier on everyone else (like making my bed).

8. Don’t offer “hope” that is impossible. It can backfire considerably.

Throughout my adolescence, there was an argument going on between the people who were treating me.

Some of them saw themselves as on the side of hope. They said that by my early twenties, if I wasn’t cured, I would at least be close enough to normal to move out on my own into the mountains and write books and be a local eccentric.

Others saw themselves as “realists.” They said that I would never get better and that, as a consequence, I would spend the rest of my life in an institution.

At first, it sounds like they’re saying two very different things. But they’re not. They’re both saying, “If you don’t get better, you’ll be in an institution for the rest of your life.” I knew I’d never get better, because I knew that every step forward was accompanied by five steps back, even when I was running as fast as I could to keep up with my same-age peers. I knew this in my bones. So, both sides were saying that this meant an institution for the rest of my life. This contributed to severe depression and suicide attempts. For years.

Nobody offered me what I got from the autistic community, which is the next point I’m going to make.

9. Expose your child, early and often, to adults like themselves, living good lives.

By “adults like themselves,” I don’t necessarily just mean autistic adults. I mean people who can’t do the same things they can’t do. I mean other people they can relate to, which even among the autistic spectrum is likely to be a minority. I would say that as cautiously as you can (because not all autistic adults are safe—there are child molesters and stalkers out there who are autistic and who target autistic kids), expose your children to the widest range of adults with developmental disabilities as you possibly can. And, specifically, expose your children to adults who are as severely disabled as they are, or even more severely disabled, but who live in their own apartments, even own their own houses, direct their own services to the best of their abilities, and take part in their communities. Show your child that they have a future whether they gain skills, lose skills, or stay the same. This is vital for suicide prevention.

We have to know. Literally have to, have to know. That we will be okay no matter what skills we learn, what skills we lose, and what skills we end up with by the time we grow up. That the world will have a place for us. That this place may not end up meaning living with you (for some of us, even with good parents, that’s our worst nightmare). But that you will help us find a place for ourselves, whatever it takes, and no matter what our skills look like by adulthood.

10. Do away with words like highand low-functioning to describe your child.

We hear you when you say things like that about us. We hear you when you call us retarded in front of other people, or even say we look retarded. We hear everything you say. And even if we don’t immediately understand it, we may understand the gist of it from the tone, and through delayed language processing we may understand it days, months, years, or even decades later. Never assume we don’t understand.

Also, don’t compare us to other disabled people. Don’t say things like, “You’ll never need the kind of help Jerry gets; he has an IQ of 30 and yours is 130.” Or “You’ll never get the kind of opportunities Jerry gets; he has an IQ of 130 and yours is only 30.” Don’t use other disabled people in power plays to convince us to do what you want. Don’t divide us into the good, obedient autistic people and the bad, disobedient autistic people (it’s always the strongest self-advocates who get put in the second category).

Just don’t compare. We already know there are vast differences between different kinds of autistic people. We already know that the differences that exist aren’t the difference between autism and Asperger’s, or HFA and LFA, but differences that have no names. Don’t reinforce the idea that the autism “experts” have all the answers about who we are and what help we need. Don’t fall into the trap of believing that if we are good at one thing, we will be good at some totally unrelated thing. Don’t make it sound like any autistic person has a certain level of skills across the board. Autistic people’s skills have been consistently described since the 1940s as being very uneven. There’s a reason for that.