Tuesday, June 19, 2018

Parents, Do Not Infantilise Your Teenage and Adult Disabled Children

Finn Gardiner
expectedly.org

Photo © G_Jewels | Flickr / Creative Commons
[Image: Black infant in a wooden high chair,
being spoon-fed by an off-camera adult.]
If you’re a parent of a teenage or adult child with a disability, it’s important to avoid infantilising them.

What is infantilisation? It’s treating people who are no longer children like children in a way that restricts their ability to be fully integrated with their age-peers. It’s talking to them in a condescending voice, dismissing their ideas and opinions, acting as though you will always understand them better than they understand themselves, or going out of your way to shield them from everything you think may be even slightly dangerous.

Infantalisation is treating your child as though they will always be a child, whether they’re five, fifteen or thirty-five.

Infantilisation is different from recognising that disabled people have support needs. That’s part of what being disabled means: being at a relative disadvantage compared to non-disabled people because we require specific supports to help us live within the community, whether that disadvantage is related to physical health, cognition, mental health, sensory processing or perception, mobility, or something else people find disabling.

It doesn’t matter what kind of disability your child has, whether chronic illnesses and intellectual, mobility, psychiatric, learning, developmental and sensory disabilities, or a combination. People with all kinds of disabilities deserve to be taken seriously and treated with respect.

A teenager or an adult with an intellectual or developmental disability is still a teenager or an adult. Accommodating the support needs of an autistic 17-year-old or a 30-year-old with Down syndrome does not mean that you should treat them as though they’re younger than their actual age. You can support people without condescending to them.

Disabled teenagers and adults are just that: teens and adults. Teens and adults may be interested in relationships, sex, college/university, dating, alcohol, parties, mature subject matter in films, TV or books, and other activities and experiences that other people their age are interested in. Pretending that disabled teens and adults don’t have these interests does them a disservice.

If you don’t recognise your teen or adult child's autonomy, they may seek out predatory people who pretend to respect them, but who may lead them into danger because you didn’t talk to them about sex or drugs or relationships or realise that they, like other people their age, may want to try things out.

I’ve seen other disability activists, like Cal Montgomery, talk about allowing disabled people the right to experience ‘dignity of risk,’ or allowing them to try new things and potentially fail at them or learn from their mistakes. I think that’s important. Young people of all ages should have the opportunity to learn what works and what doesn’t work for them.

I understand the desire to protect one’s children from harm. If I had children I would want to avoid them from being harmed, too. Unfortunately, you can’t always control what happens to people throughout the lifespan, as much as you may try. The inherent uncertainty of life requires that parents allow their children to adapt and respond to that uncertainty. There is no such thing as a permanent cocoon, and you’ll find that your teenage or adult child is probably more resilient than you may expect. We deserve the right to try.

Infantilisation is very familiar issue to me. I myself have a developmental disability and my parents—my father in particular—infantilised me as a teenager and as a young adult. I wasn’t allowed to do what many of my peers were allowed to do; my parents claimed that I ‘wasn’t ready’ for many of the things everyone else my age seemed to be allowed to do, like going to school dances. My parents restricted what I read, thinking that I wasn’t mature enough to handle heavier themes in books, TV and films despite encountering similar subject matter in my assigned readings at school. They would force me to attend church even when I’d told them clearly that I was no longer religious; they justified this by claiming ‘in our house, we serve the Lord,’ even though I was only going through the motions of practising Christianity.

I was also a legal adult when this happened; I didn’t tell my parents explicitly that I was no longer Christian until I was eighteen. The appearance was what mattered, even if it was clear my beliefs had changed. When I was nineteen years old, my parents installed parental controls on my Windows account. (I found a way to disable them a few days after they installed these controls without their noticing, but that doesn’t excuse the fact that they still treated me like a small child even though I was an adult.) I was old enough to vote. In fact, I had voted when I was eighteen; I distinctly remember being eager to vote against George W. Bush in 2004.

My parents didn’t always give me the right to try, or if they did, they would do it begrudgingly and blame me if whatever I tried didn’t work out, instead of listening to me and working with me to identify strategies that did work for me. For them, supporting me meant controlling me.

I should also add that recognising that your teenage or adult child with a disability is, in fact, a teenager or an adult is different from using their age as a weapon against them. You can respect their autonomy and recognise that they may need support in certain areas. Just because somebody struggles with housework and certain kinds of planning, as I do, doesn’t mean that you can tell me ‘why, you’re 32! If you want to be treated like an adult, you should be able to muster up those non-existent executive functioning skills!’

Yes, I’m an adult. That doesn’t mean that I don’t have support needs. Rather, it means I should be able to share what my support needs are, and direct the means by which I receive support. Autonomy in adolescence or adulthood is about being able to make decisions about one’s own life and enlisting support to make those decisions and implement them. It is not about having to do every single thing by yourself if your disability prevents you from doing so.

Again, teenagers and adults with disabilities are still teenagers and adults. We have the right to make decisions about our lives and receive support to help us make and carry out those decisions. Having a disability doesn’t mean we’re children, or that we don’t have the right to learn by trial and error. We should be allowed to learn and grow from our experiences.

Your children are not an extension of you; they’re autonomous human beings who will eventually develop their own goals and priorities in their lives that may or may not coincide with yours. Your job is to help guide and support them, not to use them as proxies for your own desires. Respecting disabled people’s autonomy helps us live healthier, more fulfilled lives.

Monday, June 18, 2018

When Autistic People Have Epilepsy

brain
Photo © Ivo Dimitrov | Flickr / Creative Commons
[image: Illustration of a human brain, in profile,
made of colorful cogs in various sizes and shapes.]

Maxfield Sparrow
unstrangemind.com

[Content note: This post discusses suicidality, mental health, and death.]

In the early 1990s, I was engaged to a man with epilepsy. He had tonic-clonic seizures and he was a big guy, so I was always alert to the possibility of an episode. I knew there were stores we couldn’t shop in, and roads I couldn’t drive down. I caught his body and lowered him safely to the ground more times than I can remember. I guarded him from the pressing crowd of curious onlookers when he came around after a public seizure. And I worried, feeling helpless, when his medication levels were off, and he had seizure after seizure.

I can’t know what it is like to have epilepsy or to have a child with epilepsy, but I can draw on the empathy I felt for what Bear went through. I'd also like to put a call out to other autistic writers: we need more essays to help other autistics with epilepsy and parents of autistics with epilepsy. (I will write what I can—we need you to write what you live.)

Epilepsy organizations and doctors have drawn attention to the interplay between autism and epilepsy on many websites, and in many books. The Epilepsy Foundation has a page on their site titled, “Epilepsy and Autism: Is There a Relationship?” (The short answer: yes, there is definitely a relationship between epilepsy and autism.) The Epilepsy Foundation underlines that fact on another page for medical professionals, titled “The Complex Relationship Between Autism Spectrum Disorders and Epilepsy,” which says, “There is a strong association between autism spectrum disorders (ASD) and epilepsy.”

While 1% to 2% of typically developing children are diagnosed with epilepsy, it is estimated that as many as a third of autistic children have epilepsy. The Epilepsy Foundation calls that “(a little) more likely to have epilepsy” but I think a jump from 2% to 33% is a far more significant shift than “(a little).” Not only do autistic children have a much higher rate of epilepsy than the general population, but a 2011 study of children with epilepsy found a 5% rate of autism (compared to the 1% to 2% range of autism in the general population) among children diagnosed with epilepsy (and mentioned an older study that found a 14% autism rate among children with epilepsy). Additionally, an estimated 25% of autistic people develop a seizure disorder at puberty, after being seizure-free or otherwise undiagnosed throughout childhood. It is also well-documented that epilepsy is a leading cause of death for autistic people.

The Epilepsy Foundation has stated that, “epilepsy associated with ASD does not change the evaluation or management of seizures,” however the higher co-occurrence rates of epilepsy and autism indicate that considering the two together and talking about how one affects the other is crucial.

Depression


Depression and anxiety are so important that I dedicated an entire chapter to them in my last book, The ABCs of Autism Acceptance. I cite research statistics about autism and depression in that chapter such as the British study that found that 71% of autistic children had a mental health issue while 40% had two or more mental health issues. Autistic children have 28 times as much suicidal ideation as non-autistic children.

Add seizures to the mix and those figures take a sharp turn upward. The Epilepsy Foundation reports that 20% of children with epilepsy have thought about suicide. Obviously the combination of autism and epilepsy dramatically increases the risk of depression. After factoring out pre-existing psychological disabilities, the suicide rate among people with epilepsy is twice as high as that among people without epilepsy.

Keep a watch for the signs of depression and don’t be afraid to talk to your child about depression. Remember that autistic people don’t always show the same signs of depression as non-autistic people and often we need depression treatments tailored to us.

Learning Disabilities


Half of all people with complicated or difficult to control epilepsy have psychological comorbidities including learning disabilities, for example the rate of ADHD among people with epilepsy is twice as high as it is among the general population. Many of the traits of ADHD overlap with autistic traits, so this is another place where epilepsy and autism can combine to increase the likelihood of executive function issues.

Emotional Regulation


Many autistic people struggle to regulate our emotions. Emotional regulation can be a struggle for people with epilepsy, too. If your child is autistic and has epilepsy, any burst of rage might genuinely be out of their control. Epilepsy also can cause a wide range of emotional distress. In addition to the situational depression that can come from struggling to control seizures, there is a condition called interictal dysphoric disorder (IDD) that is marked by depression (dysphoric) between seizures (interictal) and worsens when seizures are less controlled.

I spent some time reading public Twitter messages from autistic people about seizures and noticed many comments about depression, anxiety, and anger occurring before and/or after seizures. If your child is autistic you’re probably already used to discerning the difference between meltdowns and non-meltdown expressions of anger. If your autistic child also has epilepsy, you need to watch for epilepsy-related anger as well. Understanding your child’s emotional landscape becomes more complicated with both autism and epilepsy in the mix.

Further Resources


On the Web


Books

  • Silently Seizing: Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum Disorders by Caren Haines, RN: www.amazon.com/dp/B00A4HPJCI