Category Archives: Advocacy

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.

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

In Which I Describe My Views on Euthanasia

Over at Bad Cripple, William Peace wrote an interesting post on assisted suicide. On my old blog, I had an entire category of posts on end-of-life issues, but here, I never discussed my views on euthanasia and assisted suicide as far as I remember.

I live in the Netherlands, the world’s first country to legalize euthanasia. Just days ago, I wrote on my Dutch blog about a book about a GP’s daily practice, in which he openly discusses euthanasia. I also read this book a few years ago that exclusively diiscusses a GP’s take on this topic. The subtitle of the book calls this GP an “euthanasia physician”.

Unlike Peace, I am not principly opposed to euthanasia or assisted suicide. I do realize there are people who are not pressured at all to kill themselves but want to die anyway. This includes people with a diagnosed medical condition as well as people who are “suffering life”.

I do, however, recognize the explicit and implicit discrimination in euthanasia-related law and ethics. People with terminal cancer can be euthanized if they so desire without much further ado. Infants with severe birth defects can be euthanized shortly after birth if the parents want this. However, a case where a doctor assisted in the suicide of a person who was “suffering life”, led to criminal charges.

The law in the Netherlands says, among other things, that a person must experience unbearable and hopeless suffering to be considered eligible for euthanasia. It isn’t stated that this suffering should be because of a diangosed medical condition. However, “suffering” is such a subjective, vague concept. Everyone suffers sometimes. In a society that is dominated by currently non-disabled people, however, it is a common assumption that people with disabilities suffer more than those without them.

As I said, I for one do not principly oppose euthanasia. It’s a much better, less painful way to end your life than conventional suciide methods. I do not say I advocate suicide – it’s a very sad, tragic thing. I also do feel that people who are suicidal need to be helped in every way possible to overcome these feelings. The thing is, we cannot fully prevent suicide.

What I do oppose is doctors suggesting euthanasia. About ten years ago, there was a case of a child born with severe spina bifida whose doctor suggested euthanizing the child. The doctor happened to be my former neonatologist, the one who said in 1986 that they were just keeping me alive and not to interfere, and who said in 2004 that he wonders about some preemies what the heck he’s done keeping them alive. The parents, like Heather Kiln Lanier and her husband (linked to in Peace’s article), believed the doctor was pushing them to consent to euthanasia, which led to a formal complaint. The doctor defended himself in the media, saying it was “just a suggestion”. Well, I do understand doctros have some say in euthanasia because they have to provide the means, but I think they only should be countering patients’ wishes when they do not want to euthanize them. Research on preemies, after all, shows that doctors are more opposed to aggressive treatments and want fewer preemies to be allowed to live than parents.

Speaking of parents, I mean no offense to Heather Kiln Lanier, but parents should not have the right to decide to have their children euthanized. As I said, newborns in the Netherlands can be euthanized under the so-called Groningen Protocol. Babies and children under twelve cannot, or maybe now they can, because the last time I checked on this topic was about a year ago. In any case, doctors are advocating allowing euthanasia on children under twelve with parental consent. You could say that a newborn does not have anything to want as they don’t have self-awareness (this is philosopher Peter Singer’s argument for infanticide). You could not say the same of a child. They may not have the cognitive ability to make informed decisions on medical treatment, but the darn well know when their parents want to have them killed.

I am almost anti-parent when it comes to this. Thankfully, parents like Kiln Lanier allow me to see how much some parents can fight for their children’s right to a fullfilling life with as little discrimination against them as possible. Kiln Lanier definitely respects her daughter’s right to self-determination.

My view on euthanasia basically comes down to this: no-one can decide for another person that they suffer so much that they should be “allowed” to die. Doctors only have the means to providde euthanasia, so they should be allowed to refuse to do it when a patient asks for it. However, they should never suggest a person be euthanized.

This does mean that children and people with cognitive impairmetns usually won’t be able to get euthanized. So be it. I’d rather keep a few people alive against their will than risk killing people who don’t want it. And just for your information, peoople with even the most severe cognitive impairments do have self-awareness, so sod your Singerian arguments there.

Terrible Things Mental Health Professionals Say

Heather Clark over at Raising Rebel Souls listed some horrible things “autism professionals” say. This made me think. Professionals can be terribly ignorant about autism. I have only dealt with a few people who claimed to be autism specialists, but I have to agree even they can made insensitive or ignorant comments. Those who don’t know much about autism but claim to know enough to diagnose and support autistics, are actually the worst.

Having an additional diagnosis of borderline personality disorder doesn’t make it any easier. I met a person with BPD when I was admitted to the locked acute ward in the big city in 2007. She was forcibly discharged then readmited or threatened with forced discharge many times because, according to her treatment team, borderlines develop institutionalization behaviors if they’re admitted long-term. Quite truthfully, I am the only person diagnosed with BPD on my unit and I don’t know anyone who hasn’t developed institutionalization behaviors, most worse than mine.

It’s quite common for mental health professionals to clash with “difficult” patients on the right approach to care, and I for one am a “difficult” patient. I don’t care. I may not always make decisions or exhibit behavior that is seen as “normal”, but that doesn’t mean that professionals can look into my head and determine why I do the things I do and what consequence will truly help me. We’ve left the days of pure behaviorism and most people would consider it dehumanizing if it were applied to them. Psychiatric patients are no exception. Here, I will list a few things that professionals say about or to me that are quite frankly terrible.

1. “You have a personality disorder so you need to take responsibility for yourself.” Everyone needs to take responsibility for themself insofar as they can. That’s nothing to do with one’s diagnosis. I am told that people with schizophrenia need to be treated more directively. For instance, if I had had this diagnosis, I would’ve been asked to come back and possibly gotten my privileges taken away if I ran off the ward. Now, I’m “allowed” to wander for hours. I don’t see how my behavior is any less dangerous now that I have a diagnosis of BPD than if I had been diagnosed with schizophrenia.

2. “You are an adult (with BPD), you should be able to remember to take care of your personal hygiene.” Well, the fact that I’m an adult says nothing about my memory – which is often better in children than adults. Forgetting to take care of one’s personal hygiene may not be common in BPD, but it freaking well is common in autism. Besides, whether it is comon in people with my diagnosis, doesn’t change my abilities. My profile of abilities and difficulties should lead to a diagnosis, not vice versa.

3. “You can hold down a conversation, so you aren’t autistic.” They never realize how one-sided the conversations are, because that’s normal for a professional-client conversation. Besides, not being able to hold a conversation is but one criterion of autistic disorder and isn’t even in the criteria for Asperger’s.

4. “You are so verbally capable.” I am, sometimes. Then again, when I am not, this is seen as deliberate manipulation and I’m left without help to “think on it”.

5. “Do you want some PRN medication?” Then when I answer “Okay”, they say: “So you did know what you wanted.” No, I didn’t, or if I did, I couldn’t communicate it. Saying “Okay” to a suggestion is a lot easier than coming up with said suggestion myself.

6. “You have theory of mind. After all, you apologize when you did something wrong.” Correction: I apologize when I think I did something wrong. I apologize way more often than is truly needed and quite often don’t apologize when I don’t realize I did something wrong. That is then seen as deliberate rudeness.

These are generally comments made to me, taking into account my diagnoses. I won’t say that people with schizophrenia or bipolar disorder don’t get nasty comments thrown their way. I just can’t speak for them.

There are also comments that makke it sound as though the staff are generally uncaring. For example, one nurse often says: “Nurses are too expensive to do cleaning.” True, we need to be encouraged to clean up after dinner or coffee, but it has nothing to do with nurses’ salary.

Post Comment Love

“You Can’t Be in Society Like This.” #BADD2015

Today, May 1, is Blogging Against Disablism Day. I have been participating in this yearly event almost every year since 2007, though some of my posts are no longer online. Usually, I had a good idea of what I was going to write about well in advance. Not now. Having been busy with the #AtoZChallenge until yesterday, I didn’t have lots of time to think up a theme.

I am therefore going to start by giving a little background on my situation and will see where this goes. I am institutionalized and have been since 2007. I was living on my own in 2007 when I broke down mentally and had to be taken to the psychiatric hospital. Though the psychiatrist who admitted me did say we would need to find me a suited supported housing accommodation, she probably wouldn’t have predicted this to take long, let alone as long as it did and does take.

One problem which I encountered was that the staff who had been supporting me while living independently, particularly the team manager, were unwilling to have me go into supported housing at their organization. Their reason was the fact that I had meltdowns. Though I did not become physically aggressive towards people, I did scream and occasionally throw objects. The team manager at one point said: “You can”t be in society like this.”

Well, let me focus on this for my #BADD2015 post. You can’t be in society like this. What? You can’t be in society like this.

I am an informal patient. Always have been. With one exception during those early months on the accute ward, no-one has ever threatened involuntary commitment. There just wasn’t enough ground for it. Yet I couldn’t leave the institution because the supported housing agency decided that “you can’t be like this in society”.

I have become much more moderate on institutionalization over the years. I used to be firmly anti-institutionalization. Not anymore. It’s probably because I just don’t have the spoons to fight a system that won’t change for the better, and that is in fact moving towards more institutionalizations for severely disabled people.

The Long-Term Care Act, which regulates 24-hour care for the most vulnerable of disabled people (which for now includes me), says that people need to get care in an institution. There are exceptions, where a person can get the “full package at home”, but there are very strict guidelines for this.

I have always promoted good, community-based care. All the while, I’m still institutionalized, and I’ve become weary of advocating for my right to live in the community. After all, if no agency wants to support me, I’ll need plenty of spoons to fight them.

What annoys me more than people’s refusal to provide me with care, is the general idea behind the comment that you can’t be in society like this. I mean, it’s still discrimination if a care provider refuses a client who isn’t violent towards them, but it is less striking than to say that this person can’t be in society like this at all. This is like saying that this person is an outlaw.

The bottom line is no care provider has been found yet that is willing to take me on. I just yesterday had a meeting with a local care officer who decides on funding for care under the Community Assistance Act. The meeting went better than I expected. Because I’m now married, I’m planning on living with my husband rather than in supported housing. Then again, this team manager led the community care team, albeit in my old city. The blanket statement that you can’t be in society like this, presumably applies to community care too. Let’s just hope that the care agencies in my current town are less ableist.

“You Are Not Like My Child” #AtoZChallenge

Welcome to day 25 in the A to Z Challenge on autism. Wow, we’re almost done! Today, I discuss a statement often made by parents of “low-functioning” autistic children towards adults with autism: “You are not like my child.”

This statement is often used to discredit adults with autism who want to advocate against a cure or who want to advise parents against certain treatmets for autism. In a way, oof course, the parents are right, in that no-one is exactly like their child (not even that child’s hypotehtical identical twin).. Of course, parents have the right to make decisions about their child’s health, so it isn’t like an adult with autism has the right to make that decision (unless the adult happens to be the parent of an autistic child too).

However, this usually isn’t about adults trying to make decisions for other people’s autistic children. I for one recognize parents’ decision-making rights and I have never directly intervened in a parent’s decisions that I did not agree with. However, the parents in this situation often use these words to discredit autistic adults trying to advocate for themselves and their right to remain the best autistic people they can be.

I, in fact, have had people tell me that, unless I agreed that I was nothing like their autistic child, I should get a fad treatment to get cured of my autism. This disrespects adults’ rights to make medical decisions for themselves.

Another aspect in which parents and adults with autism have opposite interests, and in which this statement is often used, is representation of autistic adults in organizations like Autism Speaks and the Autim Society of America. It is a fact that thse and other such organizations have few or no autistic adults on the board of directors. Autism Speaks used to have John Elder Robison as a poster puppet, but that’s about it. In few other disability communities do parents say that adults with said disability cannot represent themselves, but in the autism community, it is a common idea. When Ari Ne’eman was eelect into the National Organization on Disability, parents everywhere protested. Now I for one do not agree with everything Ne’eman says and I do feel he’s a bit too inexperienced to serve on a government advisory board. However, I do not see why, just because he isn’t a parent, he can’t be on the board.

Let’s face it: we are not like your child. We are adults. However, autistic adults at one point were autistic children, and many had the same problems today’s autistic children are facing. Parents could learn from how we coped.

I do not say that there are no autistic children with an intellectual disability or who are non-verbal, but there are autistic adults with these challenges too. Also, if an autistic adult appears to function well now, it doesn’t mean they functioned as well as a child – or even that they function as well in real life now.

I consider myself a moderate mama on many debatable autism issues, but one thing I can’t stand is being silenced for being disabled. This is exactly what the “You are not like my child” crowd do.

Vaccines and Autism: Stop Beating a Dead Horse #AtoZChallenge

Welcome to day 22 in the A to Z Challenge on autism. Today, I focus on a very controversial subjects: do vaccines cause autism?

The answer to this question could be very short: no. The Autism Science Foundation has compiled an exhaustive list of studies on the subject, which investigate pretty much every aspect of vaccines that the anti-vaccine community has blamed for autism, including whether vaccinated children are generally more likely to be autistic than non-vaccinated children. The anti-vaccine crowd have consistently demanded such a population-based study, but several were published and they still believe vaccines cause autism.

The problem is a little more complicated in one tiny aspect, and this is the fact that the general autism community believes that autism is purely genetic. This has not been proven, and the anti-vaccine community has a point to suggest environmental factors in general could be risk factors for autism.

What if avoidable environmental factors, such as vaccines, did cause autism in genetically vulnerable children? After all, we know that vaccines and other environmental factors carry risks. It is easy to say that no more vaccinated children are autistic than non-vaccinated children, for example, but what if a multitude of environmental factors, including vaccines, could contribute to autism? As a parent, after all, you’re not dealing with a population of vaccinated and unvaccinated children; you are dealing with your own child.

You have to weigh risks. With vaccines, however, the problem is you run the risk of losing herd immunity if you and a lot of parents are not vaccinating. Herd immunity is the condition in which a disease has been extinguished due to a large part of the population being immunized to it. This is tough, because you are not dealing with the entire population as I said; you are dealing with your child. It is not like, if you don’t vaccinate, they are guaranteed to die of the disease the vaccine protects against, but another child just might. In this sense, while I advocate parents’ right to make decisions about their children’s health, I urge parents to be responsible.

Another problem is that the vaccine controversy hinders research into other environmental and genetic factors that might cause autism. For example, many people using biomedical interventions for autism find that their child has (or is thought to have) a lot of things wrong with them, including for example food intolerances. What if the key to finding the cause of autism lay in fact with such other, often trivialized, biological factors? It is understandable that parents who are part of the pro-biomed community are discredited, because they keep insisting vaccines cause autism in spite of overwheming evidence to the contrary.

Research is not advanced if people advocating for it keep asking the same questions that have been answered a million times. If you truly want to prevent autism (which I for one don’t, but many parents do), support research into a variety of enviornmental and genetic risk factors and stop beating a dead horse.

High-Functioning vs. Low-Functioning Autism: It Isn’t a Dichotomy #AtoZChallenge

Welcome to day eight in the A to Z Challenge on autism. Today, I want to focus on a controversy within the autism/autistic communities: the high-functioning/low-functioning dichotomy. It isn’t a dichotomy at all, but many people feel it is. Let me explain.

A number of more capalbe autistic people do not want to be associated with “low-functioning” autistic people. Conversely, many parents of less capable autistic children do not feel their child has anything in common with “high-functioning” autistics. My point in this post is not that there are no differences between people on the autism spectrum. In fact, there’s a saying going round that if you’ve met oen autistic person, you’ve met one autistic person. It is also true that some autistic people are, overall, more capable than others. My point with this post is that there is no hard line to cross between high-functioning and low-functioning autism.

I already described some common assumptions about the HFA/LFA distinction in August of 2013. These assumptions are mostly false, because they are based on the dichotmous view of functioning levels. For example, a person doesn’t suddenly drop off a cliff in functioning when their measured IQ score is below a certain point. Again, a person with an IQ of 50 obviously does funciton at a lower level than a person with an IQ above 100, although with autism affecting much more than just cognitive ability, this isn’t even necessarily that simple.

After all, in autism, much more than cognitive ability is affected, and a person who has a high measured IQ might have severe behavior problems because they do not understand social situations, have sensory processing issues, etc. For example, I have a measured IQ of roughly 150, but I still need intensive support.

There are, of course, people who fall on the less capable end of the spectrum in almost all areas of functioning. They have a low measured IQ, are non-verbal, have severe behavior problems like aggression, etc. Some others are at the more capable end of the spectrum in most areas. These people – most of whom have an Asperger’s diagnosis -, appear just quirky and odd in social situations, but do not have many other problems. I do not say there is no difference between these people. What I mean to say is there is no cut-off point or clear-cut ability that all “low-functioning” autistic people can’t perform and all “high-functioning” autistics can.

Acceptance and Autism #AtoZChallenge

Today, for my first post for the A to Z challenge, I want to focus on a fundamental aspect of parenting an autistic (or non-autistic) child and of being a person: acceptance.

Many pro-cure autism parents don’t like the word “acceptance” when used in the same sentence as “autism”. They think that to accept their child’s autism means to like it, or to see it as something that can’t possibly be negative.

In truth, accepting means simply acknowledging what is. I remember I was discussing acceptance with a former therapist and saying I wasn’t ready toa ccept something. At that point she said that I might not be ready to accept the current weather but it’s still stormy whether I accept it or not. It is in the same mindset that I would like to encourage parents and autistic people to accept themselves or their autistic child.

Most parents, even those who would like to take away their child’s autism, accept their child for who they are. In other words, they acknowledge that their child is autistic now. Some obviously don’t, as some parents are in denial and others view autism as something completely separate from their child, but most do. Acceptance does not mean not wanting to change anything. In fact, in dialectical behavior therapy, a common treatment approach for people with borderline prsonality disorder, you are taught that to change something, you have to accept it first.

Let’s face it: your child is autistic. That’s the reality you have to acknowledge as a parent if you even want to begin to change anything about your child. You wouldn’t start treatment for autism, whether it’s behavioral or biomedical or medication treatment, if you didn’t accept your child is autistic.

I can illustrate this with my own life. My family till this day does not accept that I’m autistic. I wasn’t diagnosed till early adulthood for this reason. Then, when I accepted that I’m autistic, I started seeking treatment. I take medication and get counseling. This helped me greatly improve behaviorally. I would likely still have meltdowns everyday if I hadn’t accepted the fact that I’m autistic.

In short, to accept yourself as an autistic person or to accept your autistic child means to acknowledge the reality of autism. As parents, you probably love your child regardless of their autism, too, but that is different from accepting them. Accepting yourself or your autistic child does not mean liking your or their behavior. It does not mean there is nothign you wish to change about yourself or your child. After all, everyone has things they want to change about themselves and one aspect of parenthood is to help your child change.