Wednesday, May 28, 2014

You, yes you, need Autistic friends.

Intended audience: parents of Autistic kids. Though obviously everyone needs Autistic friends.

So your child was just diagnosed with autism. Breathe. Breathe deeper. Relax. It'll all be ok. But you have some work to do.

The first thing you need to do isn't find therapists. It isn't commiserate with other parents. It isn't become an AAC expert (though all of these things have their place!). It's something not in the autism introduction packet: you need to connect on a human level with adults like your child. You need to go make some Autistic friends.

I don't mean a mentoring relationship, though those are extremely important and I am a big fan of mentoring (and mentoring your child & being friends with you are not mutually exclusive). I definitely don't mean "translate my child to me" (which is not a friend thing particularly). I mean find local Autistic adults with whom you have common interests and connect as equal human adult people.

There are a whole lot of reasons this is the best thing you can do for your child:

First, and possibly most importantly but mileage varies: your child is noticing things. If you go through a mourning phase, or a difficult adjustment phase, your child will notice and possibly blame himself. Your child may not have the vocabulary for it, but at some point he will figure out that he isn't the son you planned for and dreamed of, and he might blame himself for that. We figure it out when we're a disappointment, even if you do your best to hide that you're having a hard time. Many Autistic children get in our heads, accurately or not, that our parents only tolerate us because they're stuck with us.

Your child needs to see you choosing to be around people whose minds work like his. It's much harder to think your parents hate you and hate your brain when they seek out the company of people who think like you. Seeing the adults who are dearest to you--and like all children, Autistic youth default to loving their parents--seeing them find someone who reminds you of you? That's supremely important. Do not underestimate the effect this can have, just knowing that your parents would choose to be around you even if they weren't "stuck" with you.

Another reason: many disabled children never meet an adult with their disability. You might be surprised, and a bit saddened, at the conclusions we come to. Some folks come to the vague idea that we'll outgrow our disabilities (and when there's no sign of that, we're reminded that we're disappointing, because you can bet we're getting that message from someone in our lives). Or, I have friends who concluded that their disabilities were fatal. That's a recipe for severe anxiety, thinking that you're dying but you feel fine and no one has felt the need to talk to you about your inevitable demise. We need adults like us; this anxiety is completely unnecessary.

Your child also needs role models. She may not be able to fill your shoes, or Uncle Bob's or Auntie Bev's or her teacher's or those of any adult in her immediate sphere. But my shoes may fit, or those of another adult Autistic. All children need people in their lives who they can realistically emulate, & Autistic children are no different. I was pretty young when I knew the adult-woman things being modeled for me were just not going to happen ever--and alternatives were never presented. I was surrounded by folks who were similar to each other and not much at all like me. This is stressful. Making your own make is hard, and it's harder when everything you do is wrong (the premise of somewhere between many and most autism therapies, and a message also sent by peers, random strangers in the store, other adults, etc). Once again, anxiety. It's easier to believe you aren't Doing It Wrong when you know happy adults who took similar trails. Knowing options for the future? Seeing unconventional but fulfilling adulthoods? So important.

If you have culturally connected Autistic friends, your child also will have a head start on a connection to the community. As he grows older, he will have a life apart from your family. This is a good thing and an essential part of growing up. The Autistic community is his birthright. We as a general rule (can't speak for everyone) welcome friendly parents, but your child is one of us. It's wonderful but also overwhelming and scary to discover a place where you're "normal" when you've never been, especially all alone. Even good overwhelm is unpleasant when it gets too big. You can make this less of a shock by having Autistic friends. "I'm not alone" doesn't have to be an adulthood revelation; it can be a given. Your child deserves to grow up knowing that he isn't alone, that there's a whole community that will embrace him because he's one of ours. The gift of growing up with this knowledge? I cannot imagine it having anything but good effects.

Also, we're awesome. Autistic people are loyal and hilarious, among other things. We're good friends. We might provide insight to things about your kid that you never thought of, completely on accident. Your way of looking at the world may accidentally clarify things for us, too. But in my experience, Autistic people are the funniest people on earth, and the most dedicated to making sense and to fixing things that are not right (admittedly, my sample might be skewed, but I also have a very large sample size). That's how the people I hang out with roll. Making friends with us isn't just good for your child. We're good for you, too, and you can be good for us. A true friendship is a mutually beneficial relationship. We have a lot to offer each other.

So breathe, put down the pamphlets about all the different therapies, breathe again, and look in your networks for some Autistic connection. It'll make your life, your child's life, and some local Autistic's life, better.

Crossposted from Radical Neurodivergence Speaking Radical Neurodivergence Speaking

Sunday, May 11, 2014

A checklist for identifying sources of aggression

One of the most frequent and difficult parental concerns that we see in the autism community is that of aggressive behavior on the part of a child or teenager.  Caring parents are often frustrated at not being able to discern the source of their child’s distress, or worry that while they can handle the physical outbursts of a small child, they won’t know what to do when a child is older and larger.

Several of us at We Are Like Your Child have personal experience with anger and aggression, or with children who do.

The following is a checklist of questions to address when trying to identify the source of and alleviate aggression on the part of an autistic child or adult.  It does not necessarily include every possibility, but is a preliminary checklist of, in our experience, some major primary issues that are likely to be related to behavior observed as aggression on the part of an autistic person.  (To some extent, many of these issues can be related to self-injury as well.)

These are presented in no rigid order of likelihood or importance—they are all important factors to consider and investigate, and may affect different individuals in different ways and different combinations.

1.  Make sure that they are not being abused or mistreated in any way—At home, at school, in therapy or other activities…by parents, by teachers, by classmates, by siblings (including what might seem like “normal” taunting)…physically, sexually, emotionally or psychologically.

1a.  If they are being subjected to therapy intended to normalize their appearance, behavior, or mannerisms, to extinguish stimming, or ensure compliance or indistinguishability, they are being abused.

1b.  Do teachers at school engage in group punishment for the misbehavior of individual students?  If so, it can feel like there’s no point to behaving well or not lashing out, since they’ll be punished anyway for what they didn’t do.  Extreme anxiety can also result from feeling like you can’t ever know what the right thing to do is, since punishment is seemingly random.

2.  Do they have a reliable and safe mode of communication?  If not, what is being done to address that?

2a.  Is gaining speech being prioritized over developing a mode of communication that works better for them?

3.  Is their communication, in whatever form it occurs, being acknowledged as such and honored?  Do people take seriously what they say, in whatever way they are able to say it?  Can they get their needs met by non-aggressive means?

4.  Is their competence being presumed?  Is their autonomy and right to self-direction being honored to the greatest extent possible?  Is their right to bodily autonomy or personal space being violated?  Are they being forced, pushed, tricked, or coerced into activities or modes of social interaction that they are not ready for?  Are they being put into situations where they feel unsupported or unsafe?  Are they being allowed to do academic work at their level of capability?  Are their strengths being recognized and supported?  Are they trusted to know and assert their own limits?  Are they being included to the greatest extent possible in plans regarding their welfare, education, and activities?

5.  Is something wrong in their sensory environment, whether at home or at school?  Is their home or classroom environment too loud, chaotic, claustrophobic, or unpredictable?  Are they trapped in an environment with other kids they find overwhelming, hostile, or threatening?

5a.  If they are intense sensory seekers in any way (and remember that someone can be sensory-defensive in some regards, and also sensory-seeking in others), do they have an outlet for intensive physical input and focus, such as a martial art, sport, hiking, swimming, or horseback riding?

6.  Are they allowed to say ‘no’ and have it mean something?  This does not mean that they never have to do something they don’t want to do (like go to the doctor or dentist), but if the matter at hand is not a matter of life, health, or immediate safety, are they allowed to refuse activities or situations that they find uncomfortable or have no interest in?
If an unpleasant situation is truly unavoidable, is everything possible being done to identify and address their discomfort?

7.  Is sadness, grief, or anxiety being expressed as anger or irritability?  (This is VERY common in autistic people.)  Have they experienced a loss of a family member, friend or favorite classmate, pet, or member of their support staff recently?

8.  Have their plans, routines, or need for ritualization been disrupted?  Has something changed recently in their environment, family life, or social milieu?

9.  Have they had a full medical checkup and blood panels recently?  Is it possible that they’re in pain or discomfort from a treatable medical condition or food allergy/sensitivity that they lack verbal means to communicate?  (Even in verbal individuals, alexythymia, body awareness issues, effects of compliance training, and atypical pain perception can make communication about illness or pain difficult.)  Nutritional, dietary, and metabolic issues can also wreak havoc with our ability to self-regulate.

10.  Are they being allowed sufficient down time and privacy?  Or does their school and therapy schedule mean that they’re working the equivalent of two full-time jobs?  Is their ability to multi-task or process being overwhelmed?  We are very vulnerable to sensory, information, and emotional overload.  Do they have truly free time to spend as they choose or be alone?  Do they have a space that is their own?

Finally, something that we very strongly recommend, if you are looking for further guidance or input, is to find an autistic adult or mentor local to you, who can meet you and your child, observe their environment and interactions, and give feedback on what kinds of changes or interventions might be helpful.

Monday, May 5, 2014

I Am a Pushmi Pullyu

[image description: a pen-and-ink drawing of an animal that looks like the front half of two llamas, attached to one another at the waist. This is the "Pushmi Pullyu" creature from the Doctor Dolittle stories, an animal that gets nowhere because it wants to go in two directions at once.]

Like the famous creature from Doctor Dolittle stories, the Pushmi Pullyu, I am pulled in two different directions and, as a result, have a hard time getting anywhere at all. I have two strongly conflicting elements to my nature and only as I approach fifty years of age am I beginning to understand both elements enough to start finding a balance between them.

One half of me is an extravert. Yes, you heard that right. I am an Autistic extravert, the creature some would assure you doesn't exist. The official definition of an extravert is someone who gets their "juice" from being around people. I do love to spend time alone -- reading, writing, drawing, composing. Most extraverts are not "allergic" to spending time alone. But I deeply crave the company of people, their smiles, their thoughts, their play. I love group activities like dancing and drum circles. I love community events, especially colorful ones like Rainbow Gatherings and pagan festivals. I crave a large and diverse circle of friends. I want to be in the thick of things.

The other half of me is both sensory defensive and has C-PTSD. That half can't bear to be around people in numbers of more than 2 or 3 or for very long at a time. Bright lights, flashing lights, temperature highs and lows, strong smells, high-pitched noises, unexpected touch, rapid movement (think gaggles of children racing back and forth) are just unbearable for me. Crowds are a sensory nightmare. I simultaneously crave the press and chaos of a crowd and recoil in horror when I actually experience it. As a small child, I wanted to play with the other children but most often ended up hiding under the table from all their dashing about and squealing and stressful unpredictability.

On top of the sensory issues, years of brutal bullying and abuse have left me jumpy, suspicious, afraid of people, untrusting. I have a deep hunger to be part of a family, a circle of friends, a community, but when I find myself in the midst of people, I freak out, I snap, I react, I run away and hide. I just can't handle being around people and the sensory issues and C-PTSD build on each other in an ever-cycling feedback loop.

For years, these two halves of me were at war, just like the two halves of the Pushmi Pullyu battle over which direction to take. It didn't help that others would say things like, "toughen up," and "just give yourself time and you'll get used to it." I blamed myself for my dual nature and took it as a sign of weakness and inadequacy. If only I could just toughen up and stop being troubled by my senses! Or, conversely, if only I could drain away this childish need for others and be strong and adult enough to be truly happy alone!

But I wouldn't allow one half or the other to win and so I was living in a war zone. And every stress that came from forcing myself to endure emotional and sensory distress, waiting to "toughen up" and get used to it, added to the invisible wall between me and community. I began to live vicariously through movies and television shows. The Big Chill. Northern Exposure. Buffy the Vampire Slayer. I drank up those scenes of community, togetherness, chosen family. I hungered deeply for that sort of connection myself, but whenever I tried to find it, I would just end up a trembling ball of anxiety and tears.

Admitting that I am a Pushmi Pullyu was at least half the road to recovery for me. I am working on the emotional issues, but the sensory issues will not go away -- they are neurological and hard-wired into who I am. I will always be a person who needs quiet, gentle, short contact with only a few people at a time. My goal now is seeking balance -- finding a middle path between the crowds I wish for and the solitude my nervous system requires.

It's a delicate balancing act and one I'm still working on. I wish I had known and understood these dynamics when I was a child. As a child, I was a bit like the "painted bird" -- the bird who is painted a different color from the rest of the flock. The painted bird has a strong instinct to fly with the flock but the flock does not recognize it as one of their own, so they peck and peck at it, even unto death. The poor painted bird just keeps flying back for more because it needs the flock and it doesn't understand why everyone keeps pecking it. It dies confused and bloodied, still struggling to rejoin the others.

That was me as a child, striving again and again to be part of the community that was bullying and torturing me so harshly. No matter how hard they pecked me, I still kept trying to be one of them. The end result of years of this dynamic is Complex Post-Traumatic Stress Disorder: I have been "shell shocked" by bullying that sometimes became so violent that my life was at risk. And still, all I wanted was to belong.

There are many children out there like me. If you are parenting a painted bird child never say anything that could lead them to feel the blame for the abuse they are getting. I was told that I was bringing the abuse on myself and that belief was every bit as harmful to me -- a harm that still lingers with me today -- as the abuse itself. Protect your little painted bird. People will say "it's just good fun. All kids go through bullying. Yours just needs to toughen up a little." Say, "no! My beautiful, gentle child does not need to become tough and hard." and do everything you can to protect your child and find a safe place for them to grow and flourish.

And if your child also has sensory issues that are also causing them to be a Pushmi Pullyu -- eager to participate but melting down from sensory onslaught when they do, gently begin to explain to them, in ways they can understand at whatever age they may be, the idea of seeking balance. Help them to learn that they can't have everything or be everything but that they can find their own middle path that lets them get the most they can of as much as they can. Help them to learn to stand strong against those who would push with threats or guilt to try to force them to step out of balance with themselves. I have learned to say no when I need to protect myself and your child can learn it, too. (And hopefully your child will not require the nearly 50 years it has taken me to learn it!)

A Pushmi Pullyu is not an easy creature to be, but when the two front ends learn to co-operate, the Pushmi Pullyu can get twice as much accomplished. Being of two, conflicting natures has been stressful for me, but as I learn to find that place of balance -- a place that no one else can prescribe for me; I have to find it on my own and trust my own process -- I am coming to love the insights I gain from living with two halves pulling in opposite directions. I am coming to value who I am and where it has brought me in life.