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.  

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