Experiencing the Unexpected - An #Autistic Son Amazes his #Aspie Father

Most parents who have children with autism experience days of difficult communication, meltdowns, outbursts, inappropriate comments or behaviour, and various amount of other things that can get us on edge or exhausted, and desperate for any, even brief, moments of quiet, peace and tranquility.

Our days can consist of therapy, of daily life and routines that can be easily upset and throw us into reactive, problem shoving, crisis averting mode,  with a bit of PR if we happen to be out in public.

So, when the unexpected happens, and you see your child doing something you never thought he'd be able to do, it touches your heart and makes all the stuff above worth it.  Your child is worth it, because your child is amazing.

I had that moment again this week with my oldest son who has high functioning autism.  We had the week together mostly to hang, and we joked around together, went swimming, went to library and bookstore together, and got him addicted to Doctor Who.

He's 14 now, starting high school in just a few weeks.  He's come a long way from the little boy who could not speak more than 10 words, and spoke only in rote phrases. From a boy who got so upset and angry when the simplest things did not happen how he'd expect.

This week, he let me come into the world of his feelings, and told me things that really bothered him, that made him sad, and told me how he really wanted to see things.  It was amazing.  He had the time with me this week to get perspective on his life, and wanted to share it with me, and sought comfort from me. He really enjoyed our time of just hanging out and talking,

It made me so proud.  He is growing.  He is changing.  He is autistic, but his autism isn't a static thing. It grows and changes as he does.  He has many obstacles to face in his life, but I had a glimmer of hope that he can adapt to life when he gets older and faces life after high school, whether it is college or training, or whatever!  

I have to remember moments like this when I am dealing with the day-to-day stuff.  There is hope, and amazing moments to come.  Today is today, but tomorrow... That's unwritten!

Do you have moments with your children that you treasure, and hope for what could be?

Videos games and the ASD mind

I just finished reading an article about a Study on video games use by boys.

The study says:

"boys with autism are spending more than two hours playing video games. That’s nearly twice the playing time clocked by their typically developing peers"

The study also claims:

"These results suggest that children with ASD and those with ADHD may be at particularly high risk for significant problems related to video game play, including excessive and problematic video game use,” 

The final quote I will pull from the study is this:

"Attention problems, in particular, are associated with problematic video game play for children with ASD and ADHD, and role-playing games appear to be related to problematic game use particularly among children with ASD.”

I guess the question I have is which came first the chicken or the egg?  Does the prevalence of video games lead those with ASD to be inattentive, or are we boys with ASD normally inattentive, and video games and computers attract our attention, because it is a world full of rules that we can know and rely on?

I don't think that some people who run studies, like this one in Paediatrics, really understand ASD at all.  There have been guys with ASD a lot longer than there has been video games and tv.  There are many ASD boys and girls (like me) that get equally lost in books, card games, music etc.   I used to play lots of video games when I was younger, but before I had any Nintendo, etc i used to sit down on the living room floor and with a deck of cards I would create the most elaborate games, and play them, by myself for hours and hours, until I got hungry, or was told to come to a meal.  I needed that.  I always needed to do something.  Something I could understand the rules to, that didn't change unless I changed it.

I don't purport to understand the NT mind at all, but I know that we guys with ASD can find it a lot easier interacting inside the virtual world than in the real world.   I know that we need to work on our links in the real world, but we also need our oasis.

Sorry for the rant, but I got riled up when I read this, and felt I needed to get my thoughts sorted out, and do this best when I write.

What do you think?

Do video games cause attention problems with boys with autism? Or is it that these boys crave worlds that they can understand?

Aspie Alpha Squad - An #Aspie Insight into our attachment theory.

I had a reflection/realization of an aspect of Aspies that is very different from that of neuro-typical people.

We sat down with the school board social worker before Easter, and I listened as he laid down the latest pedagogical theories that he has been learning and is now trying to instruct teachers on.

You see, our Aspie daughter has been having issues in school with her behaviours (go figure), and her teachers just don't know how to deal with her and get her to move away from her rigidity, which comes across as stubborn, and disrespectful. It has been getting increasingly worse so they brought in the school board social worker to help us parent her better.

This social worker explained to us that over the last 50 years our society has moved from an adult-centred teaching/discipline style to a child-centred style. The concepts of time-outs and counting are some of the functions of this style. He told us that based on new evidence over the last few years of the way children's brains work, that every kid has an absolute need to centre themselves to an Alpha - a strong dominant person who they can be assured knows and has everything they need.

The problem he says now is that Alpha's (parents/teachers) in kids lives now are either deferring most things to their child's wishes, or are "discipling" kids by trying to "modify" their behaviours and having them spend time away to "get them to think of what they've done".

An example that this social worker gave us is when a child is acting up in class, the teacher will tell the child to stop, then if it persists, she will countdown to the child to stop, then next step is to take or send the child to some place in the class for a "time-out", and finally if that doesn't work, the child is remove from the classroom to sit in the hall or to go to the office.

Each of these steps is to encourage children to change their behaviours. This may work with some children, for others they get an experience of the teachers attention, which they are seeking. Each step rewards the child, rather than drives the child to "behave". And for these children, they learn that negative behaviour gets this attention that they are desperately seeking from their "Alpha".

I have to admit that I have used these parenting techniques with my children, and it has miserably failed with my Aspie daughter.

According to Gordon Neufeld, in his book Hold On to Your Kids: Why Parents Need to Matter More everyone has a built in need for attachment. If someone doesn't get it from one person, they will seek it from another. He believes that for children if it's not primary caregivers, then it will be peers.

However the more I thought about my daughter and myself as both a child and now as an adult, the more I thought that some of what he said may be right, but it just didn't hit the mark with my daughter.

My daughter doesn't attach to anyone, rather she ends up causing others to attach to her. She may seem at first to be a very engaging girl. Watching her go out and play with new kids that she has never met before at a McDonald's playland would make you think she has excellent social skills at first. But what is she doing? She is trying to get the kids to play games that are part of her created world. She seems fun and exciting, so kids are eager to play with her. But after awhile, she keeps playing but the other kids start moving away, or complain to her or their parents that they don't want to play her games anymore, or that she is being mean. It's not the kids that my daughter was attached to. She was attached to herself and pulled others to her.

It's the same with adults, teachers and even us her parents.

Now that is a big part of my problems parenting her. I am Aspie who feels the world revolves around me and my way is best and really should be followed for the world to work it's best... If I'm really honest I have to say that's a core belief that I have, as do a lot of other Aspies I know. It's not right, and intellectually know this ( as I have been occasionally been proved wrong), but my gut reaction to situations around me come from this innate feeling that I'm right.

I'm an Aspie. She's an Aspie. They say iron sharpens iron, but that means a lot of sparks will fly.

When I say that Aspies seem to self-attach (and my evidence is very limited qualitatively), I don't mean to suggest that we don't have any attachments or relationships with others including our parents or teachers. My interpretation of attachment means someone to defer to for having our needs met and having rules defined and enforced.

When I was a young kid, I loved my mom (I still do, Mom - don't worry), but I didn't really believe I had to follow her rules or the rules of others if they didn't make sense to me. I may have obeyed the rules sometimes (most times, right Mom?), but I intrinsically believed I was right so these rules were wrong. This has caused lots of struggles and consternation in my life as both a child and as an adult.

Only in my last year and a bit have I begun to see the cracks in my core belief, and even though I immediately react from my core belief, I am getting better at reflecting in these "outbursts" and rationalizing the correctness of my perspective. I can tell you it's not easy or natural for me to do this.

I asked my two youngest daughters tonight who was the most important person on earth to them. My older aspie daughter hummed and hawed and then said her fairy book. However in the background my youngest daughter  said "Mummy and Daddy". And that pretty well validated my theory.

Attachment Parenting - Are we knowingly causing our children to feel anxious?

The trick for me now is to figure out how I can take and use this insight to aid and guide my daughters along this treacherous path called life, and help the both of us learn how and when to attach to others outside ourselves.  It will certainly make life interesting...

An #Aspie dad to #ASD kids

Our family's journey through Autism began 10 years ago with the diagnosis of Autism with my oldest, my only son. I knew, I KNEW, that he had autism. Little did I know then that I know now about how life with him would be.

I knew that many of the dreams that you have of how kids should grow up would be different, but I really did not know how it would be. My vision of the future was empty, not without hope, but without a framework.

Fast forward 10 years, when he is now about to turn 14! (I am old!). He has learned and done more things that I could have imagined he would back then. He still has challenges, many of them, but he is funny, charming and contains an encyclopedic knowledge of the things that he is really interested in. He loves computers and video games, and we connect most when we talk about these things. He is very smart, and when you give him time, he will display his vast knowledge and understanding of things.

He is in high school, where he is finally getting the supports he needs to be able to function well in a regular class. His elementary years were full of schools telling us problems they had with him, we would suggest ways that they could use to resolve them and they would patronize us by pretending to listen. We'd them get calls a week later stating they were still having the same or worse problems. We'd ask them if they did the things we'd suggested, and they would say "no, we can't do that, or we'd have to make all kinds of changes!"

He has been much better in high school. Next year he will be in senior high school, and with individual classes instead of staying with his classmates all day. Sigh... I hope he will do well with assistance there.

Why am I thinking of all this now, when I intended to write about his Aspie sister? I guess it is because his birthday is next week, and I am thinking about him. I haven't written too much about him anywhere until now.

My wife and I were talking about the changes that are coming in DSM V, with regards to the spectrum. I guess I feel the same as a lot of other Aspies, that lumping Aspergers together into ASD with all other diagnoses on the spectrum, just doesn't make a lot of sense.

My son, who has high functioning autism, and my daughter I has Aspergers, are very different. My son needs guidance a lot in order to be semi-independent, but still for the most part stims and lives inside his head. My daughter is full of life, is very interactive and adventurous, and needs guidance to pull her down from the clouds to see the safe paths for things.

My son will most likely grow up needing assisted living arrangements, and he is probably going to be somewhat dependent on us or others all his life. My daughter on the other hand will live independently, but will probably rely on us or others as she faces challenges in a world that just doesn't think the way she does. Heck as an Aspie, I know that from first hand experience!

So, there is a real difference between high functioning auties, and aspies, and I am hoping that these changes don't eliminate the need for help for Aspies, and that rather we look at the spectrum as just that, people with similar issues, that have individual strengths and needs.

I love my son. I love how he has grown and matured. I am excited now about what lies ahead for him instead of afraid to think ahead. His future is in front of him, just as much as any NT kid's is. So Happy Birthday Boo! Enjoy another year ahead!

Raise The Flag! Celebrate World Autism Awareness Day

Municipalities all across Ontario are being sent the World Autism Awareness Day flag to raise at noon on April 2nd, 2013. This event will hopefully help raise awareness of autism, and have people to take the time to learn what Autism Spectrum Disorders are all about.

Event Details:
When: April 2nd, 2013 @ Noon ET
Where: City or Town Hall in your municipality
Why: To raise awareness of Autism Spectrum Disorder (ASD)


Please encourage your local municipality to raise the flag! If you want more information then read the full press release here.