Tag Archives: Intellectual Disability

Blind People Should

A few years back, there was a flash blog event that had autistic bloggers all finish the sentence “Autistic people should …”. I think the reason was to counter the hurtful search suggestions that Google made when people typed in “autistic people should”. I was reminded of this event when I read this weeks #theprompt, which is “should”.

I was also reminded of my own preconceived ideas about what disabled people should. A few days ago, I wrote to a disability support group on Facebook about feeling like I was setting a bad example for the disability community because I don’t work and spent years in an instituton. Shouldn’t I have to explain why I can’t work or live fully independently? The short answer is: no.

I was feeling like I should have a disability label to justify my every need because of what I learned whilst being part of E-mail groups run by the National Federation of the Blind, one of the two major organizations of the blind in the United States. This was in the early 2000s, mostly before I’d been diagnosed with autism. What I learned was that blind people, unless they have severe additional disabilities, which I’ll address later, should be able to achieve as much as sighted people do. For example, we should be able to read at the same speed, get around with a white cane completely independently, go to college (I think I picked up the term “college-bound” there), be employable, etc. I can’t do or be any of these things. Keeping the bar of expectations high was the motto of the parents’ organization of the NFB or so it seemed. I always imagined a candy bar put up on a star light years away and me being told to reach for the stars.

Sometimes, when people judged blind children or adults they only knew through newspaper articles not to be independent enough, someone would come up with the get-out-of-jail-free pass: “Maybe the person has additional disabilities?” This is a real possibility, since strangers usualy assume my every impairment is due to blindness despite my additional disabilities, so I assume newspaper reporters are no different. Yet does it matter? Should it? Apparently, sometimes.

In an old (like, late 1990s) issue of Future Reflections, the NFB’s magazine for parents of blind children, a blind adult reported his shame when he crticized parents of blind teenagers for not taking their teens to a seminar on independence. It turned out he was speaking to a roomful of parents of teens with multiple disabilities, so obviously they couldn’t bring their teens. I assume most of these teens had the type of disability that seems to have a monopoly on the term “multiple disabilities” when additional disabilities are involved: severe intellectual disability. After all, when I played the additional disabilities card after my autism diagnosis in 2007, I was told to look up Temple Grandin.

I may sound bitter and I shouldn’t be. After all, I do get the services I need now, even though they cater to, well, people with severe intellectual disabilities. That being said, I know I’m incredibly privileged now to have found my particular care agency, because most others would try to fit me into the mentally ill mold or the blindness mold or any other not-completely-fitting mold rather than looking at my needs.

This all brings me to my point, which is that blind people, autistic people, any kind of disabled people, any kind of people in fact, should not have to justify their needs. We are all human and all different, after all.

mumturnedmom

Test Scores Don’t Determine Ability to Get By in Life

On a Dutch blog by the mother of a child with autism, I read about the impact of IQ on school choice. The child in question is intellectually disabled. I am not. However, I can totally relate to measured IQ impacting the choices made for me regarding my education.

I have a verbal IQ that was at one point measured at 154. I have had many IQ tests other than this one. I didn’t score as high on all. On one, I didn’t even score within the gifted range. Nonetheless, my IQ score of 154 is mentioned in every diagnostic report about me.

This is a verbal IQ. IQ is composed of two components: verbal and performance. My perfomrmance, or non-verbal IQ cannot be measured because I’m blind. This doesn’t mean it doesn’t impact me. Professionals involved with autism have consistently suspected that my performance IQ is significantly lower than my verbal IQ and this could be one reason my abilities are constantly overestimated. It cannot be measured, however, so let’s just continue expecting excellent, or at least good performance out of me. Or not.

The mother writing the blog I mentioned above desperately wanted her child to have an IQ above 70 so that he could go to a school for children with behavioral disturbance rather than a school for children with an intellectual disability. In my own case, my parents desperately wanted me to score high so that they could convince the special school for the blind to recommend me to regular education. Finally, they needed not just to prove that I am intellectually capable, but that I excel academically, because they had decided I should go to grammar school. I had to have a standardized test score above a certain number and thankfully I scored within the expected range. The special school principal called my parents in total shock, because she didn’t have a clue that I was this capable.

In real life, unfortunately, it takes more than academic excellence to excel, or even to get by. It takes more even than a high verbal IQ. More than a high IQ in general, in fact.

Why do people rely so heavily on test scores to determine what they can expect out of someone? Because my abilities are consistently overesitmated, the autism consultant recommended further testing to determine why I function at a much lower level than my (verbal) IQ would suggest. My psychologist dismissed this idea. I understand, because it takes a lot to be able to assess someone who is blind. Besides, I’m not so sure I’d be able to take yet another exam, as that’s what it feels like.

Why don’t we just understand that people are different? People have different abilities and difficulties and they shouldn’t all have to be Einsteins or prove why they’re not. Yes, I know Einstein is sometimes suspcted of having had practically every neurodiverse codnition under the sun. I don’t care. My point is that, if someone doesn’t get by, they need help and it doesn’t matter whether a test score says they should be able to get by.

My (Somewhat Hypocritical) Opinion on Force in Mental Health and Developmental Disability Services #Write31Days

31 Days of Mental Health

Welcoem to day 25 in the 31 Days of Mental Health. Today, I’m inspired by yet another question from the 30-day mental illness awareness challenge. For day 25, the question is about your opinion on force or coercion in mental health.

I used to be a strong opponent of any form of coercion in mental health. I remember once in late 2007, when I was still on the acute unit, a fellow patient being medicated against their will. I saw this as a particularly nasty violation of the patient’s human rights, worse than for example seclusion. Now I know that for some people, if they have to choose between seclusion and rapid tranquilization, their choice is not always seclusion.

I used to believe, in my naivety that there is always an alterantive to force in mental health. I still believe there is in most cases. For example, studies of involuntary outpatient treatment don’t compare the programs to the same level of care but without the component of force. If they did, maybe it’d be shown that there is no advantage of forced treatment, and it is just the intensity of care that makes the difference. In this light, I remember one particularly poignant interaction I had with a nurse on the acute unit. She said that I’d be secluded if I needed more care than they could provide. Indeed, involuntary outpatient treatment is generally seen as a way of averting hospitalization. Now I’m not a big fan of psychiatric hospitalization, but I cannot help but believe involuntary outpatient treatment is just a convenient (for the providers and the government) way of saving money. So are most forms of force in mental institutions, as my interaction with the nurse illustrates.

Of course, a few people cannot be kept safe even with constant one-on-one attention, assuming the government would allow this. A notable example is the case of Brandon, a young man who had been restrained in his institution for people with developmental disabilities for years when the newspaper got word of it in like 2010. I was infuriated at such inhumane treatment as restraining a person for years, but my husband and many other people I spoke to countered that there simply was no alternative. Medications hadn’t helped (and besides, that’d be another form of force) and Brandon was so aggressive that he’d attack anyone coming close.

That being said, still, in many cases, force in mental health and developmental disability care is used as an alternative to proper care. I remember one example that I read about at the time Brandon’s case was in the news. A proponent of electroshocks as aversive therapy for people with severe self-injurious behaviors presented the case of a person who was hitting his eyes so vigorously that he was at risk of becoming blind. He described the situation of the nurses conferring at the nurse’s station while the man was blinding himself in the next room, adding something like: “And what quality of life does a person with an intellectual disability who is also blind have?”

I cannot begin to tell you all the things that are wrong in this situation. Nurses sit at the nurse’s station conferring (or drinking coffee) way too much rather than taking care of their patients. We do not know whether one-on-one attention would’ve prevented this man from blinding himself, because there was none. INstead, his treatment team chose to set him up with a shock machine. In addition, I totally understand a sighted, intellectually capable person’s judgment that an intellectually disabled person who is blind has no quality of life. However, the proponent of shock therapy hardly considered the effect whatever causes this person to self-injure has on his quality of life, possibly multiplied by the effects of electroshocks. We do not know whether the person in question had a painful medical condition. I assume the cause of his self-injurious behavior was unknown or could not be taken away, but I’ve heard parents and professionals advocating for aversives or restraints when the cause of problem behavior is known and can be removed.

I do use some double standards though. Being in a mental institution myself, and especially having seen some of the more severely mentally ill people, I have lost some of my naivety regarding forced treatment. Perhaps less self-righteously, when soemone bothers me, I’m happy to have them secluded, restrained or medicated. There are some people on my unit who are very regularly verbally aggressive or simply very annoying when psychotic. In those cases, though I would like to say I oppose force, I’ve actually been relieved when the nurses gave these people some PRN medication, often with only some sembleance of consent. I would like to believe that the guys who constantly talk to their voices are actually helped by a low-potency neuroleptic, but at least I do not know whether these people are bothered by their voices and if so, whether the PRN medication actually quiets their voices. I should care, but when it’s past 10PM and I want to sleep, quite frankly I don’t.

Supporting Someone Who Self-Injures

I have a diagnosis of borderline personality disorder (known in the UK as emotionally unstable personality disorder). BPD is sometimes known in the Netherlands as emotion regulation disorder, because it causes people to be unable to deal with intense and rapidly shifting emotions. BPD sufferers get stressed much more easily than those without mental health problems. They also tend to cope with stress ineffectively. One destructive coping mechanism that is common in BPD is self-harm.

Self-injury is not unique to people with BPD. In fact, starting with DSM-5, non-suicidal self-injury is its own diagnosis in the psychiatrist’s manual. Before then, if a person self-harmed, they were often incorrectly diagnosed with BPD, which has many more symptoms than just self-injury.

Self-injury is also common in people with autism, which is my other diagnosis. It is thought that people with autism, particularly those with a co-occurring intellectual disability, self-harm as a way of self-stimulatory behavior (to regulate sensory input) or as a way to communicate. For example, they might start to self-harm when they are overloaded sensorially or cognitively, or when they are in pain.

People with BPD are thought to self-harem to regulate their emotions. For instance, they may feel intense hopelessness or rage, or they may conversely feel numb and self-harm to have any sensation at all.

Self-harm is commonly thought of as a way of manipulating or attracting attention. This may be true, but isn’t necessairly. Many people feel a lot of shame about their self-harm. I, for one, don’t tend to self-injure to garner attention of others. I self-harm for many reasons, one of them being expressing emoitons to myself.

It is important to realize that people who self-injure, no matter their diagnosis, are in distress, be it physical, sensory, cognitive or emotional. It is important to find out what precedes the self-injury and what follows it. Don’t make judgments about what goes on inside the self-injurer’s mind. For example, I commonly start self-harming when I get frustrated trying to communicate my needs to my staff. It may then be easy to assume I do it “for attention”, because the staff give me more one-on-one attention when I self-injure. However, if I am able to communicate my needs effectively, I don’t self-injure to get attention. Behvior is communication, but bad behavior is not always intended to be malicious.

There are different ways of supporting self-injurers. Prevention is the first step. Some people, particularly those with emotion regulation disorders, may benefit from mindfulness and other skills training in a form such as dialectical behavior therapy. Others may benefit from augmentative or alternative communication methods to signal they’re in pain or overloaded. I need a little of both. I practise emotion regulation skills and mindfulness, but sometimes I also need support in the area of communication. For example, I cannot always communicate when I need a staff member to help me with something, be it emotional support or a practical task. Signaling cards, gestures or other alternative or augmentative communication may help in this situation.

When someone self-harms, it is of course important that their physical wounds be taken care of if they cannot do this themself. I find it helps most when someone doesn’t make a big deal out of my self-injuring when taking care of my wounds. Some professionals advocate limiting contact for a day or more after a person has self-injured, reasoning that in that case they have solved their problem already, albeit in a destructive way. Though I find that a bit of distance is good shortly after I self-harm, it is still important to make sure the person is safe from further harm. I do also find that I want to discuss the situation later when I’m calm, so that I can learn what better strategies will help me in the future.

Everyday Gyaan

Mental Illness and Autism #AtoZChallenge

Welcome to day thirteen in the A to Z Challenge. I am late once again to write my post, because I have still not mastered the skill of planning ahead and I was out of town all day.

Today’s post is on mental illness. Autism, of course, is not a mental illness; it’s a developmental disability. However, many people with autism experience mental health problems or mental illness. In fact, studies show that as many as 65% of people with Asperger’s Syndrome have a co-exisitng psychiatric disorder.

Anxiety and depression are the most common mental health problems experienced by people on the autistic spectrum. It may be hard to diagnose these problems because of autistic people’s different ways of expressing and connecting to emotions. For example, I once read about a boy with Asperger’s Syndrome who suddenly stopped launching into lengthy monologues about his topic of interest. People thought that he was doing better, because, after all, he was displaying fewer autistic symptoms. On closer observation though, the boy was found to be severely depressed.

Autistic people might display a number of symptoms that indicate they are suffering from comorbid depression or anxieyt. For example, they may become completely withdrawn, may experience an increase in obsessional behaviors, or may have suicidal tendencies. Paranoia, aggression or substance abuse are also indicators that the person with autism is experiencing mental illness.

Treatments that are effective for anxiety, depression or obsessive-compulsive disordeer in the general population, often are also effective for higher-functioning individuals with autism experiencing these symptoms. However, it is important that psychiatrists be aware of the person’s autism spectrum disorder. For example, if a person is experiencing depression because of loneliness, they may need to be provided with social skills training in addition to cognitive-behavioral therapy or medication.

In the above paragraphs, I mainly talked about mental health problems in people with Asperger’s Syndrome or high-functioning autism. Of course, autistic people with an intellectual disability or those who are non-verbal, can also experience mental illness. In fact, it is thought that mental illness is more common in people with an intellectual disability than in the general population. In people with an intellectuall disability, it is hard to diagnose depression and anxiety. Depression may often be misdiagnosed as cognitive decline or dementia. People with an intellectual disability may show aggression as a symptom of depression too. This may lead to them being misdiagnosed and not getting adequate treatment.

Intelligence and Autism #AtoZChallenge

Welcome to another day of the A to Z Challenge on autism. Today, I will discuss autism and intelligence.

First, what is intelligence? Intelligence is generally defined as a person’s overall cognitive ability across a number of domains, such as verbal comprheension, perceptual reasoning, working memory, etc., as measured by standardized IQ tets. Examples of IQ tests include the Stanford-Binet test used mostly in the U.S. and the Wechsler scales used more in Europe.

An average IQ score is 100. IQ follows the bell curve by which, the further a score deviates from average, the fewer people have this score. The standard deviation used on IQ tests is 15 on the Wechsler scales. This means that an IQ of 70, which is defined as the cut-off for intellectual disability, is two standard deviations below the norm. Approximately 2% of the population have an IQ below 70.

On IQ tests, the score is usually divided in a verbal commmponent and a non-verbal or performance component. Autistic people commonly have a gap between their verbal and non-verbal intelligence quotient. Some non-verbal autistic people show a dramatic increase in their IQ scores once they learn to type. Other people, usually diagnosed with Asperger’s Syndrome, have a high verbal IQ but a lower or even below-average non-verbal IQ.

It used to be thought that autistic people usually had a low IQ or intellectual disability. Current estimates are that approximately 40% of children with autism spectrumd isorder also have an intellectual disability. Children diagnosed with Asperger’s Syndrome by definition do not have an IQ below 70. However, some people with Asperger’s score as borderline intellectual functioning (IQ between 70 and 85) and may benefit from services for people with an intellectual disability.

IQ may be a predictor of how capable a person will be of becoming independent. However, other factors play a role too, such as adaptive functioning. Young children with Asperger’s usually do not have problems with self-help skills or adaptive funcitoning (other than that required for social interaction). However, as children mature, more problems with adaptive functioning in general may arise. I unfortunately have never had an assessment of adaptive functioning, so I don’t know how I’d score. However, people are usually surprised at my ability to use the computer but not, for example, cut up my own food or take proper care of my personal hygiene without prompting.

Five Things People Usually Won’t Understand About Life with Multiple Disabilities

Julie of Counting My Spoons just posted a list of six things healthy people just won’t understand about life with chronic illness or pain. I didn’t know the first one – that migraine sufferers just can’t take their medication at the first hint of a migraine -, because I don’t have migraines, but I could relate to the others. I feel somewhat guilty about that, because I don’t have a diagnosed chronic illness, except for possible irritable bowel syndrome, which causes the least bothersome of my symptoms.

I do have multiple disabilities, and I thought I’d do a similar list of things people who don’t have these disabilities won’t understand. These all seem to boil down to “we are individuals”, but for some reason, this is extremely hard for the non-disabled to understand.

1. We can’t just choose one of our disabilities and get services for that and then be fine. Seriously, why do you think it’s called having multiple disabilities? My social worker once asked me which is my most significant disability, so that we would find a supported housing agency suited to that. I know, that’s how the system works, but quite frankly, it’s nonsensical.

2. We’re still multiply-dsabled even if we don’t have an intellectual disability. It’s a common idea that “multiply-disabled” means intellectually disabled plus something. In reality, those who are blind and autistic like myself, those who are deaf and wheelchair-using, etc., may still identify as multiply-disabled. I identify as multiply-disabled partly to dismantle the myth that only those with an intellectual disability struggle with “additional needs” as it’s politically correctly called.

3. You can’t just take apart our needs in terms of which needs are due to disability A, which are due to disability B, etc. and then have a complete picture of our needs. For one thing, some disabilities cause a variety of impairments in many different areas and cause different impairments for different people. For another, disabilities influence each other. For example, I am blind, so you’d think I could be using my hearing to compensate. In reality, because of my difficulty filtering out background noise, I can’t. This is somewhat understood by people working with the deafblind, but if you have other disabilities, not so. In general, however, not all our needs may be explainable by a disability we’ve been diagnosed with. I remember at one point when I was at the locked psychiatric ward a man was there who had a vision and hearing loss in addition to his psychiatric illness. A nurse told him that he had to clean up the table after eating, because “he’s doubly-disabled but not triply-disabled”. Now I’m not saying that multiply-disabled people should be exempt from doing chores. I’m just saying that his apparent unwillingness to do the task might as well be inability, regardless of whether this is thought to be “normal” for a person with his particular combination of disabilities. (FYI: I consider mental illness a disability, so in that respect the man was triply-disabled, but in the psychiatric nursing profession, it’s usually not seen this way.)

4. Mild, partial or invisible disabilities contribute to our constellation of needs too. This isn’t applicable to me, because I have a visible disability, but it was applicable to some extent to the man at the locked ward I menitoned abov. He was partially sighted and hard-of-hearing, so because of his remaining sight, he was expected to do tasks I was exempt from. As I said, disabilities influence each other, so it may’ve been that he was in some areas more impaired than I am, but because all of his disabilities were partial, he was often regarded as more or less non-disabled.

5. We have absolutely no obligation to have an explanation for our every experience that is out of the ordinary. You have strengths and weaknesses too, so do we. I’ve often felt like I needed to have a diagnosis to explain my every difference. In reality, I’m an individual with my own sense of self, my own interests, my own stronger and weaker sides. Like I said above, our disabilities influence each other, but so do our personality traits. I am not the sum of my disabilities. I am myself.

Self-Reliance Is Overrated, Self-Determination Is Underrated

In his post on cripple identity, William Peace talks about the fact that non-disabled bodies with their non-disabled functions are seen as the norm, and disabled people never fit in. As Peace gets older, he develops an increasingly carefree attitude regarding these ideas, thereby embracing life and his disabled identity in life.

As I read Peace’s post, several points came to mind with regards to how his reasoning can be applied to those with cognitive disabilities or mental illness. He explicitly writes about walking as an overrated function, but what about such functions as speech, language or cognitive processes such as logical thinking and organizational skills?

I am reminded of a discussion I had with my old psychologist when I had only been in my current institution for a short while. She was discussing the “can” vs. “can’t” attitude as presented by physical rehabilitaiton patients as well as the mentally ill. She tried to explain the importanc eof having a positive attitude towards learning practical skills such as cuttign up my food (which I am physically nable to do) and cleaning my room (which I am unable to do due to executive dysfunction). What she didn’t realize is that my refusal to learn these skills is only partly out of lack of self-efficacy (low self-esteem). It is more out of a feeling that these skills are not as important. I didn’t go hungry when I lived independently, and though my house did go dirty, if I lived with my husband, it wouldn’t be much harder for him to do most cleaning whether I lived there or not. In my opinion, self-regulation skills and self-directedness are much more important. I did, after all, end up in a psychiatric crisis when living on my own.

As disabled people – and as abled people too, but they don’t seem to realize it -, we need to set priorities. I might’ve wanted to learn to cut up my food or clean my room, if I had the energy to do this amongst all the energy that it costs me to manage my anxiety, regulate my fluctuating emotions and basically stay as close as possible to mentally stable.

Let me say this very bluntly: self-reliance is overrated. Self-determination is underrated. Too often, disabled people are trrained in the skills necessary to appear as non-disabled as possible. They are rarely trained in the skills necessariry for being as self-determined as possible. This goes especially for cognitively disabled and mentally ill people, who are still presumed to have a reduced capacity for self-direction.

Even today’s psychiatric rehabilitation movement, with its focus on recovery groups, (ex-)patients as support workers, and the strengths method, still teaches that mentally ill people can live normal lives in spite of their mental illness. It does not teach that it is possible to live a normal live while embracing your mental illness, let alone that the entire idea of “normal” is hugely overrated. The recovery group I participated in in 2010 was groundbreaking in the respect that it consisted of institutionalized patients, some of whom (like myself) weren’t moving into less restrictive environments.

Less restrictive. Boy, need I talk about that? Less restrictive should mean that a person has more choices over how they live their life, not that there is less support. In this respect, the physical disability movement has already paved the road with their independent living centers for example. Unfortunately, the law here in the Netherlands is not in favor of mentally ill and cognitively disabled people in search for self-determination, because, besides needing constant supervision, the only ground for long-term care with 24-hour availability is “severe self-direction problems”.

Six Myths About Autism

I haven’t written about autism in a long while. It is mostly because I have been busy writing other things, such as posts chronicling my eating disorder recovery journey and posts inspired by writing promts. I also don’t want to write too involved posts that are unreadable to a large majority of my readers. However, just today, I came across a really interesting post dismantling five myths about cerebral palsy. I am not a total laywoman on the subject of cerebral palsy, but even I could learn from thhis post. So I thought maybe I could do the same on autism. Here are some common myths, some of which even autistic people or parents of autistic children buy into. I did get rather caught up in details I think, but if some of my readers learn something from this, I’m content.

1. There is one single, known cause of autism. Most autistic people claim that autism is 100% genetic. Some people, mostly parents of autistic children, claim that autism is caused by vaccines, pesticides, or other environmental factors. These claims are often politically motivated. The autistics want a genetic cause because it means they are truly wired this way, while the people who claim vaccines or other environmental facotrs cause autism, want to argue that autism is a disease that can and should be cured. The reality is, the cause of autism is unknown. While the vaccine theory has been disproven, other environmental factor theories have not and twin studies show that autism isn’t 100% genetic. Other factors, such as premature birth and pregnancy complications, have been named too. Even if autism were 100% genetic, there are likely more than a few genes that contribute.

2. Autism is a physical illness. Related to the vaccine theory mentioned above, some people believe that autism is caused by “leaky gut”, an inability of the bowel to digest certain proteins that will leak through the bowel wall into the bloodstream and also through the blood-brain barrier. Until very recently, I thought that “leaky gut” is a fake condition propagated by alternative medicine. It isn’t. In fact, there are several conditions speculated to be due to this problem, for which the genes have been located on chromosome 16. The most logical example is Celiac disease, but other bowel conditions (eg. Crohn’s Disease) and in fact neurological conditions (eg. multiple sclerosis) may be partly caused by this problem. Therefore, it is not entirely impossible that autism in some cases may be partly due to “leaky gut”, but this is still just a theory. Research in this area (eg. whether gastointestinal problems are more common in autistics) shows mixed results. If a child or adult with autism has gastrointestinal symptoms, they may feel better after treatment for these symptoms. That doesn’t mean that autism is physical in nature. It could be related to “leaky gut”, but that doesnt’make the condition itself a physical health problem. By the way, there are no treatments so far that solve “leaky gut”. Avoiding gluten and dairy may help, but its effects have not been proven in those who do not have diagnosable Celiac disease.

3. Autism is a mental illness. This is somewhat of a political statement, and so is the stateement that it definitely is not a mental illness. I don’t particularly care if someone says autism is a mental illness, but most people disagree. There is no strict definition of a mental illness (contrasting it with a developmental disability) in the psychiatric manual (DSM-5). There is a definition of a mental disorder in DSM-5, but this includes autism too. There is also a definition of a neurodevelopmental disorder, the category under which autism is classified. This category includes conditions like ADHD, intellectual disability, Tourette Syndrome, and autism of course. This is a similar category to the categories of schizophrenia and other psychotic disorders, obsessive-compulsive spectrum disorders, or any other category within DSM-5. Formal categorization aside, however, most people say that autism is not a mental illness because it is developmental in nature. It is a common myth however, often held by autistics who have had negative experiences in psychiatry, that absolutely no treatment originally designed for other mental disorders, can be used for neurodevelopmental disorders such as autism.

4. All autistic people have an intellectual disability. Autistics span the full range of intellectual abilities. The most pessimistic (if an intellectual disability is seen as a negative outcome) studies show that around 40% of people with autism spectrum disorders have an intellectual disablity. However, IQ is hard to measure in people with severe social and communicative deficits, so those with more severe autism are likely to score lower on a standardized IQ test (such as the Wechsler scales) than their actual ability. Others, particularly those with good verbal skills, may score higher than their real-world functioning would suggest.

5. Autism affects children only. The fact that it is developmental in nature, doesn’t mean that autism doesn’t affect adults. Autistic children gorw into autistic adutls just like for example children with Down Syndrome grow into adults with Down Syndrome. Children and adults with autism may improve in daily functioning, but they won’t become non-autistic.

6. Autism can be cured. Autistics, like people with other developmental disabilities, can learn adaptive skills to function as well as possible in daily life. That again doesn’t make them non-autistic. The most evidence-based intervetnion is applied behavior analysis, an intensive behavioral training. Even this approach can merely teach autistics to act like a non-autistic person in the situations they’ve been trained in. Some people cliam they have “cured” their autistic children with biomedical interventions. I won’t call these people liars, but there is no scientific evidence to support their claims.

Mums' Days

“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.