Sunday, December 30, 2012

Parenting Autistic Children For Allistic (Non-Autistic) Parents

I should preface this by saying I don't have experience being a parent, but I do have experience being an autistic person (and earlier in my life, I was an autistic child).  I do know what works for me, and I do know what doesn't.  I do know what sorts of things set me off, I do know about meltdowns.  There are many guides to parenting autistic children by non-autistic parents, but the problem here is that a non-autistic person cannot understand fully what it's like to be autistic.  So this is just my guide on what things work and don't work for me.  I can't promise my suggestions will help every autistic child, but that's why trying to figure out what is specific to your child - what helps them to calm down when they're having a meltdown, what makes their meltdowns more intense, what makes them confused, what their sensory sensitivities are, how best to communicate with them - is so important.
  1. Recognize the signs for when your child is having a meltdown.  Do not think of it as a temper tantrum or a fit, it is not the same at all.  Your child may have some small amount of control during a meltdown, but they're also not thinking the same as when they aren't having a meltdown, but they can't control the fact that they're having the meltdown itself.  When I'm having a meltdown, I cannot calm myself down, I need time for the meltdown to play out.  Screaming at me or getting angry at me will not help at all, in fact the sensory overload of someone screaming at me is very likely to make them meltdown much worse. 
  2. If your child is verbal or uses an augmentive device, ask them (while they are not having a meltdown) what they'd like you to do when they're in a meltdown state.  Then do that.   I prefer to be left alone during a meltdown, I often try to run away to my room.  If your child moves to another room during a meltdown, do not follow them unless they are in serious danger or are endangering the life of another person.  If you are outside, follow them but at a comfortable distance.  Do not crowd them.   If you cannot find a way to find out what your child is most comfortable with, observe what actions on your part make a meltdown worsen or lessen.
  3. Adjust your expectations.  Read this: article by Jim Sinclair.   Recognize that your child is not a neurotypical child, and do not hold them to expectations you would have for a neurotypical child.  Your child may never have the life of the average neurotypical person, but this isn't a tragedy.  This is okay.  Your child is a person, and as long as they feel fulfilled with their life, what is the problem?   I see many parents saying, "My child will never go to college.  They will never get married." etc.   The funny thing here is that there are plenty of neurotypical people who do not go to college, and do not get married, but when autistic people do the same, it's viewed as a great tragedy.   We're held up to a standard, and if we do not accomplish everything the average neurotypical person could, we're seen as failures.   This isn't fair.  What comprises a fulfilling life is different for everyone.   If your child has sensory sensitivities, do not expect them to put themselves in situations that make them experience negative reactions due to these sensory sensitivities.  If your child says they cannot eat a certain food, cannot wear a certain type of fabric, respect that.   If your child stims, don't stop them from stimming.
  4. Do not post pictures of your child online, while discussing autism, without their consent.  If you post articles about your child's autism, unless you have their consent, please use a pseudonym.   One of the worst things about the Liza Long article is that she compared her child to a mass murderer - without her child's consent, including her child's picture, and not under a pseudonym.  Autism unfortunately may come with a lot of stigma.  It is unfair for you to expose your child to that stigma without having their consent.    I understand wanting to discuss your  child's wellbeing, but please do not do it at the price of their privacy.
  5. Do not assume your child cannot understand you.  Even if you have trouble understanding the ways in which your child communicates, this does not mean they cannot understand you.  Please do not say hurtful things about your child in front of them just because you do not think they understand you.  An example of this happening is in the Autism Speaks Autism Every Day video, where Alison Tepper Singer (formerly Executive Vice president of Autism Speaks) talks about wanting to drive her and her child off the Washington Bridge due to frustration, but only did not do so because of thinking of her other, neurotypical child.  Please do not do that.  You may think your child does not comprehend, but they very well may.
  6. Do your research.  Research organizations before you support them, as many organizations that claim to support autistic people do not really do so.  Understand how autism manifests itself in your child, why they do the things you do.  Here is some information generally on autism: and here are some publications on autism -  Always read critically, especially with information written by non-autistic people.   Research therapies, as some can be harmful. There is a lot of misinformation out there about autism, and you have to wade through it to find the facts.
  7. If you have children who are non-autistic, talk to them about their autistic sibling(s).  Oftentimes, allistic siblings will feel very resentful or angry towards their autistic siblings, and this can lead to prejudice or even abuse.  Make sure allistic siblings have a good idea of what autism is and what it isn't.  Make sure they respect the humanity of their sibling, and view them as equal.  Make sure they are not mistreating their siblings.
  8. Respect your child as equal to any other child.   While they may not live a life that is the same as that of the average neurotypical person, this doesn't mean they're less.   It just means that they have different needs, different requirements, different goals.  And that's okay.   Don't treat us as inspiration porn:, don't treat us as burdens, don't treat us as tragedies.  Treat us as human beings who just have different needs than some other human beings. 

I will likely add to this as I think of more things, but that's it for now.  

Saturday, December 29, 2012

"Autistic People Can't Communicate"

I don't understand this statement at all.  Two people are required to communicate.  So if there's a disconnect in communication between two people, then those two people are having trouble communicating as a group entity.  It doesn't make sense to say one person cannot communicate, because clearly one person by themselves cannot communicate, as it takes 2 individuals for communication to occur!   Autistic people obviously can't communicate with themselves, as no one can do that because that wouldn't fit within the definition of communication. If there's a problem between an autistic person and another person and they have a disconnect in communication, it doesn't make sense to blame it on the autistic person.  The autistic person is trying to communicate, the non-autistic person just isn't understanding.  Why is the burden on the autistic person to communicate in the way neurotypicals do, to speak or use body language in a way they understand?  Maybe part of the problem here is that the allistic person can't understand the way the autistic person has tried to communicate with them.

This is somewhat similar, to an English-speaking person and a person who speaks only another language (say, French - I'm using French because speakers of some other languages experience racially charged prejudice, and I don't want to make a false equivalence) trying to communicate.  It would be ridiculous for the English-speaking person to say, "Whoa, I don't understand this French-speaking person.  I guess they just can't communicate" and then write them off as a person who needs help because they aren't able to communicate.  Clearly they can communicate, the English-speaking person just doesn't speak their language.  It's really neither person's fault here, but it's certainly ridiculous to blame the non-English speaking party and try to "fix" them.  Possibly our language is sometimes very hard to understand, harder than French or English, but if someone spoke a language that was really difficult to learn, that still wouldn't mean they couldn't communicate.

Perhaps the problem isn't that us autistic people have trouble communicating, it's that we use different languages.   And maybe if you learned our language, you'd understand.  But you will never understand someone else's language if your first assumption is that they cannot communicate.

Sunday, December 16, 2012

Liza Long, You Are Not Adam Lanza's Mother

While many who read the viral article, 'I am Adam Lanza's Mother, it is necessary to consider the opinions of autistic people.  This article presents the view of Liza Long, the parent of a child with some sort of an unknown mental disorder.  Despite the fact that her child, Michael, does not have a clear diagnosis, the article is presented as a view on autism, furthering the stigma towards autistic people.  

Autistic people are generally not violent people.  Violence is not a symptom of autism. We are not Adam Lanza.  In fact, we are more likely to be victims of violence then we are to be perpetrators.  We are Casey Albury, whose mother's threats of violence were ignored until it was too late.  We are Marcus Fiesel, wrapped in a blanket that was duct-taped shut, and placed in a closet until temperatures reached over 100 degrees Fahrenheit.  We are Ulysses Stable, who was murdered by his father - who deemed him a "burden."  We are Matthew Graville, abused, tortured, and eventually killed by his brother.  We are the hundreds of other autistic people killed by people who were supposed to protect us.  When people kill us, it's rarely remembered and often excused.  I am all of these people, their deaths ring in my head.

But I am not Adam Lanza.

I value people's lives.  I scream and cry when I see dead animals.  I have never seen a dead person, but I can imagine the experience would be traumatizing.  Killing people is not something I could ever do.  Adam Lanza was a disgusting human being, but he is not disgusting because he is autistic.  He did not kill those children because he is autistic.  Autism doesn't make one lack compassion.  Autism doesn't make one go into a school and murder people.

Now, back to Liza Long's article. 

I do not doubt that there are children in this word who are violent - and finding out why these children act violently and taking steps to protect their family is certainly necessary.  I do not like Liza Long's article, however.  I do not like Liza Long's article because I do not trust her as a reliable narrator.  I do not like Liza Long's article because she is so adamant in her reliability as both a participant in the events and a narrator.  I do not like Liza Long's article because she splices the memory of her sentences with phrases telling the reader that her tone was "affable, reasonable."  If her child is autistic, as she states is a possibility, there is a possibility he is reading her tone in a different manner than she is meaning it.  I do not like Liza Long's article because she lambasted her child publicly. I dislike the fact that she threatens to forcibly institutionalize her child because of a suicide ideation, as someone who has been not allowed to leave a mental institution despite the fact that it was incredibly triggering to me and only made me have meltdowns.   I do not like how she refers to her meltdowns as 'fits.'  I do not like how she essentially hypothesizes that her child will become a mass murderer.  I dislike how the entire article ignores the abuse (at the hand of Michael's father) that she talks about on her blog.  I especially do not like Liza Long's article because she has publicly admitted to fantasizing about killing her child: "I thought of Abraham, knife poised above the body of his innocent son. Why does God give us these urges, then tell us not to act on them?"  Liza Long has given me lots of reasons not to trust her.

I do not know if Liza Long presents the events she talks about reliably.  Perhaps she does, and her child has behavioral problems that certainly need to be addressed.  But these behavioral problems are not the cause of autism.  Threatening to kill someone is not a symptom of autism.  More likely, it's him responding to abuse.

However, I dislike the enthusiasm with which people latch onto the stories of parents at the expense of autistic (or perceived autistic) children, lamenting the horrors of autism and praising the mothers for being so "brave."  Sometimes I wonder if they have forgotten the autistic people who were murdered by their parents.  Many of the parents of these people also demonized their children and convinced people their children were to blame.

But then I remember the world has never known of these murders - they have never even crossed many people's minds, and if they have, they have been excused as being a problem related to the lack of mental health services or the difficulty of raising an autistic child, rather than an institutional problem related to the demonization of autistic people.

There is certainly a lack of mental health services, and this is something that needs to be addressed, but not at the expense of hurting the many autistic people who are not violent.  Not at the expense of people like Casey Albury, Marcus Fiesel, Ulysses Stable, and Matthew Graville.  Not at my expense.  We were never Adam Lanzas.