Thursday July 29, 2010
This week, the news has been full of the tragic story of a Texas mother who murdered her children because she suspected them to be autistic. According to the LA Times,
An Irving, Texas, mother accused of strangling her two children with an antenna wire told a 911 operator that she killed them because they were not "normal."
"Both are autistic," she said. "I don't want my kids to be like that. I want normal kids."
From the little information available, it seems clear that this particular mother was not able to fully understand the magnitude of her actions. In fact, it seems likely that there were many issues behind this tragic action that had nothing whatever to do with autism.
What makes this story hit home, though, besides the terrible nature of the crime itself, is the searing statement "I want normal kids."
Of course we all, really, want "normal" kids. That is, we want kids who can talk, laugh, play, learn, run, make friends, excel, discover and grow. When we have kids who are diagnosed as "other than normal," our days and nights are dedicated to helping those kids find paths to enjoying life as normally as possible. Sometimes, the struggle to achieve normalcy is overwhelming - even to parents who understand the disorder, feel empowered to help their child, and have the support they need to take action.
Kim Stagliano of Age of Autism has written a moving piece about the struggles she's gone through to help her girls. Even for an editor at a major autism blog who has a book coming out and all kinds of support networks within the autism community, it's not easy.
For those of us with kids on the autism spectrum, the reality is that we may never be able to achieve that "normal" life we long for. Sometimes, that feels okay. Other times it doesn't. Sometimes we may need time away, and other times we may feel overwhelmed.
It's okay to step away. It's okay to feel overwhelmed. It's more than okay to ask for help. It's also important to remember that occasional frustrated, sad or angry feelings - combined with responsible, thoughtful action - are natural and appropropriate. While stories about murder may terrify us, they do not reflect who we are as individuals or as a community.
Monday July 26, 2010
This fall, we begin our fourth year of homeschooling our now-fourteen-year-old son with high functioning autism. Homeschooling has been a good choice for us, at least as a temporary measure (we are debating the pros and cons of high school!), but one of the tougher aspects has been combating the prevalent myth that homeschooling means zero socialization.
Every time we explain that we homeschool, we hear from at least one concerned parent or teacher -
"But how can he learn to socialize if he's all alone?"
"Public school is such a great place to learn to make friends!"
"Don't you worry that he won't develop social skills?
In fact, however, Tom's public school experience was far more isolating than homeschool. Here's why.
In public school, Tom was in an "autism only" class with nine boys, none of whom could act as role models and all of whom lived in other school districts (he was in a county-based program, not a local district program). In homeschool, Tom can take homeschool-oriented classes or get involved with a wide range of activities with local, typical peers.
In public school, Tom's therapies were often scheduled to conflict with social and/or important but non-academic experiences such as music, art, gym and recess. In homeschool, we can schedule around inclusive, non-academic experiences. Even better, we can carefully select the inclusive, non-academic experiences so that our son can meet kids with similar talents and passions and learn to work in a group (through band, homeschool gym and collaborative projects).
In public school, the educational emphasis was on building "typical" learning and social skills so that our son could learn through verbal presentations and express himself through speaking and writing. In homeschool, while we work on those skills, we can also allow and encourage our son to learn and express himself through observation of the natural world, through drawing, music, construction and more. What this means is that Tom can show off his achievements in a setting where he gains genuine respect (on the stage, at a "geography fair," etc.).
At public school, kids like our son are often strangers to the typical students, popping in and out of specific classes "as they are able." Worse, they are often the targets of bullying. Recess and gym, when at least some typical kids are able to socialize freely, are the most difficult times of all for our kids. When things aren't working well, it can take months to make a change. In homeschool, we can pick and choose the settings where Tom interacts with typical peers - so that he has a reasonable shot at connecting in a positive way. If things aren't working well, we can make a change on a dime.
In public school, kids learn to interact with kids their own age - and with authority figures. The expectations change constantly, as peers age and demands increase. In homeschool, our son learns to interact with community members of all ages. As a result, he gains skills -- at the library, the grocery store, the local theater, the local conservatory, the birding club, the museums -- which will last him a lifetime.
There's a lot more to be said about the pros of homeschooling - and the reasons why homeschooling can actually improve social skills. As I've mentioned, we may make a change at some point in the future... or we may not. In some public settings, and for some kids, public school really is an ideal choice. But for any readers who are considering homeschool for their child with autism - and for those concerned that homeschool = isolation - it's important to set the record straight!
Join the conversation at the Autism at About Dot Com Facebook Page!
Sunday July 25, 2010
A post in today's Autisable post so clearly illustrated an important point that I just had to mention it here. The post is titled "Yes, a Cure for Autism Would Be Nice," and its content and tone suggest that it was written by a teenaged sibling of a brother with low-functioning autism.
The writer describes a very difficult and painful home situation, and concludes:
It's not okay that my brother cant tell us his wants and needs. It's not okay that sometimes, he cries and when we ask him what's wrong, he doesn't have the ability to communicate with us. It's heartbreaking for all of us to see someone so important to us to be deprived of so much. It's not a crime for us to want more for him.
At the beginning, the author makes the statement "I know that there are high functioning and extremely intelligent autistic individuals out there that love themselves and wouldn't want to change things...". At the very end, as a tag line, the author writes: "Note: This is NOT a post about high functioning individuals with autism."
The writer, in my opinion, does an excellent job of clarifying the incredible chasms we face when we write or talk about "autism." Indeed, there are people on the spectrum (and parents) who wouldn't change a thing. And there are also people, like the writer's brother, who are literally unable to communicate or care for him/herself.
What this writer was able to do - which many either can't or won't - is clearly define the distinctions, and carefully explain that she/he is referring ONLY to a particular group of individuals on the autism spectrum.
If we can draw a lesson from this post (and I think we can), it's that people with autism and their families are very different from one another - and that's ok. For some autism really is a difference. For others it's a disability. And for still others it's a tragedy. When we're willing to explain our situations and our perspectives, no one need feel defensive or angry: rather, we can read the words of a sibling whose experience may or may not resonate with us, and respond from the heart.
Saturday July 24, 2010
How do you teach a child with autism to socialize in a typical setting? The answer is neither simple nor fool-proof. One parent writes:
Our 3yo son has just been diagnosed with Asperger's and Social Integration Dysfunction. My frustrations lie in his inability to initiate any sort of play. Everything is SO literal. Do we force him to socialise? I see his enthusiasm at watching other children play but it seems as if he is watching them through a window. Rarely does he join in, nor does he seem to want to. We recently signed him up for a soccer camp where he spent 30mins of the 45mins screaming to go home. When we finally did leave he spent the rest of the day talking about it as if he had had the best day of his life and asked to go back?? Do I keep forcing him to social? Is this harming him? Is this more for me than him? Any thoughts?
To be honest, I've never heard of a diagnosis of "social integration dysfunction," and couldn't find it on the web. I'm guessing that you may be dealing with SENSORY integration dysfunction (sometimes called sensory processing dysfunction), which is a disorder that often goes along with autism. With sensory integration dysfunction, the individual may be over or under-sensitive to sensory inputs from light, sound, smell, taste and touch.
This can make ordinary experiences more challenging, since the child may find, for example, that the bright lights and loud noises of a gym are overstimulating. Or, on the other extreme, he may deliberately smash into walls or other children during play just to experience the sensation.
Meanwhile, you're asking a three-year-old with social and sensory and communications challenges (and very likely to some motor challenges) to take part in a very complex game that is really too difficult for any typical child under the age of six or seven. Yes, I know that lots of kids play peewee soccer - but it's really above most little ones' heads. It's not too surprising that he's finding it tough to understand and follow the physical, social and communications rules in order to play the game appropriately.
So... what to do?
First off, recognize that a child with Aspergers and sensory issues is different, and (1) needs some therapies to help him develop physical and social skills and (2) may thrive with activities that require a little less physical and social prowess and a little more of whatever your son loves and is good at. It may also be that you, his parents, can provide some of the help he needs to develop play skills and learn to connect more successfully with others.
Some specific suggestions:
- Look into sensory integration therapy. It's usually offered by an Occupational Therapist, and may well be available either through your school/early intervention program or through a local or regional autism center. You may also find individual therapists by googling. Be sure to check out therapists' reputations through local autism support groups.
- Consider Floortime, RDI, or Play Therapy to help your child with Aspergers build the kinds of interpersonal skills he'll need as he gets older and more socially involved. Floortime in particular can be implemented at home by parents and other adults, and all three are great tools for bonding and building both relationships and joyful play skills.
- Look into speech therapy. Even if your child is talking, he may be using speech idiosyncratically or not understanding some of what is said to him. Pragmatic speech skills will be important for him as he gets older.
- Select camps and extracurricular activities with your son in mind - and not on the basis of what's popular with neighbors and friends. Consider small group activities with very clear rules and direction, such as... martial arts. horseback riding. swimming. Boy Scouts. There are many other options; soccer is probably not one of them.
Many readers of this blog have been through this or a similar situation with their child on the autism spectrum. Do you have any further suggestions for this parent?
