What Now? Ten Tips for Families with a New Autism Diagnosis

Squillo http://confutata.wordpress.com I’m sure the person who said hindsight is 20/20 didn’t have a child with autism. (Actually, I’m sure he or she didn’t have a child of any kind.) You’re never finished being a parent: as the Jason Robards character said in the movie Parenthood, “you never get to spike the ball and do your touchdown dance.” I have no idea if some of the things I’ve done will end up having helped or hindered my attempts to attain that Holy Grail of Parenthood: happy, healthy children. Of course, this has nothing to do with autism, and everything to do with just being a parent, but there are challenges (and joys!) specific to parenting a child with autism, hence the birth of this group and this website. Shannon, one of The Thinking Guide to Autism’s founders, asked me to put together a list of things I wish I’d known…

tpga_kristen_spina-8181821

(Extra) Ordinary Days

Kristen Spina http://kristenspina.wordpress.com/ I hang back, following but not too closely, watching my son and his two best friends through the viewfinder, my face hidden behind the awkwardness of a zoom lens. As I watch the boys cross the red wood bridge, I snap half a dozen photos. And then again, as they settle in on the dock, taking turns casting, tossing pieces of bread to a giant turtle bobbing on the lake’s surface. There is little to show here for my son’s differences. He is simply one of the guys, enjoying a bit of freedom and fun on a weekend in the Catskills. I scan the lake and the mountains beyond, the grey clouds sitting low in the sky, and think about how remarkable the scene really is — how its very ordinariness is something to celebrate. I take a few more pictures, then leave the boys to their…

What is Neurodiversity?

Mike Stanton actionforautism.co.uk When I attended the National Autism Society’s first International Autism Conference in London in 2005, I heard Professor David Amaral tell the story of a young man with Asperger Syndrome who visited the MIND Institute at UC Davis. The young man was asked what he would do if they could develop a pill to cure autism. He thought for a while before replying that he would take half the pill. I think this illustrates a real difference within the autism community. There are many who pathologize autism as a disorder that afflicts an otherwise healthy individual. If you hold this idea you naturally look to understand the causes of autism in order to find that “autism pill.” The idea of neurodiversity was developed by autistic people in opposition to the pathologizing model. According to them autistic people are not disordered. They have a different sort of order.…

Coming to Terms

Kev Leitch www.leftbrainrightbrain.co.uk Its now been nearly seven years since Megan, my eldest daughter, was diagnosed with both autism and a comorbid “severe learning difficulty” (known in the US as mental retardation — it means her measurable IQ is less than 70). Those six years have been a personal journey for me as I first came to terms with Megan’s autism, got lightly involved in the ‘cure autism at all costs’ movement and then as I saw the results (or non results) of this movement, genuinely came to terms with the fact Megan was autistic and got involved in the neurodiversity movement. In those days, 2003, there was very little online regarding autism. No blogs existed that I could find, very few forums and little to no email lists. In order to get your “Google PhD” in those days one had to dig very hard indeed. And boy did I…

4558669478_4fcbf38c70_o-1718218

The Autism Path

Jean Winegardner www.stimeyland.com I feel that when I got my son Jack’s autism diagnosis, it was as if I had been given directions to a trail head that started us down a path. The path was different than the one I’d planned on and this path was rockier than the one I left behind, but still, it was a path. Walking along this autism path was better than milling around aimlessly in a meadow, unable to find a trail head of any sort. When I think of Jack’s autism and where it takes us, I can actually see this path in my mind. It is made up of dirt and rocks and it winds through and up a mountain pass. I’m walking it with Jack, and my other children walk on either side of me. Sometimes the rocks in our path cause only Jack to stumble, but sometimes they are…

Thoughts on Prognosis From a Speech Language Pathologist (SLP)

Jordan S. Sadler, MS, CCC-SLP http://www.communicationtherapy.net/ Parents of children with autism spectrum disorder (ASD) sometimes ask, “What is my child’s prognosis?” and that is understandable. As a parent, it is likely that I’d be asking it myself. However, it may be as difficult for therapists to answer as it is for parents to ask. For one thing, what do parents mean by “prognosis”?  Does it simply mean, “What will the outcome be for my child after all this therapy? What will his future look like?” Or is it a way of asking, “How close to typical do you think my child will become? Will he eventually blend in with his peers more?”  I always ask families to bear in mind just how broad the range of “typical” really is; it’s a moving target. Is your typical the same as my typical? Is “quirky” as okay with you as it is…

3756543983_2f1f736ae4_m-4150376

Autism, Parenting, and the Importance of Attitude

Shannon Des Roches Rosa www.squidalicious.com www.canisitwithyou.org www.blogher.com/blog/shannon-des-roches-rosa Consider the same day, the same circumstances, the same children, the same parent – but filtered through two different attitudes: Leo and I had the worst day ever. Leo and I had the best day ever! Why does Leo always wake up so early? His sisters sleep until we shriek at them to get up, like self-respecting children should. I’m so irritated that he’s sometimes wet in the mornings. He’s never going to be fully self-sufficient. Leo got up at 6:30, but that’s certainly better than yesterday’s 6:00, and then it was his dad’s turn to attend to our early riser. And how amazing that Leo now spontaneously asks to go to the bathroom when he gets up, and is frequently dry. If you’d told me three years ago how well he’d be doing with his self-care at age eight, I wouldn’t have…

3634312302_caf15bc873-3612911

Outings, Travel, and Autism

Shannon Des Roches Rosa www.squidalicious.com www.canisitwithyou.org www.blogher.com/blog/shannon-des-roches-rosa We are adamant about taking Leo on as many excursions as we can, to stores, movies, restaurants, parks, and other destinations. He is an able-bodied and energetic boy, and he likes a good adventure as long as we respect the limits of his tolerance. Also, we want Leo to be a boy-about-town so he gets used to being part of our community, and our community gets used to him. Outings aren’t always easy. But I have no intention of leaving Leelo home when we might succeed. I do not care if other people think he behaves strangely or makes funny noises; as long as he is not harming or interrupting anyone, we carry on with heads raised, meeting stranger’s stares with confident and unapologetic smiles that I will admit to having practiced in the bathroom mirror. Here are some of the tactics that…

Identifying and Avoiding Autism Cults

Shannon Des Roches Rosa www.squidalicious.com www.canisitwithyou.org www.blogher.com/blog/shannon-des-roches-rosa A child’s autism diagnosis can mess with parents’ heads. Media portrayals of children with autism and their adult spectrum-mates dwell almost exclusively on negatives and challenges, so when a parent is told that their child is autistic, they are usually incredibly upset. It doesn’t help when doctors lack the bedside manner to soften the emotional impact of their diagnoses, or have no information about contemporary autism therapies and resources. When that happens, parents are both freaked out and flapping in the wind. Their child’s doctor was supposed to give them answers and guidance, but instead upended their lives, then shoved them out the door. No one can explain why they have a child with autism, and they know nothing about autism. They are emotionally reeling, angry with the medical establishment, and hungry for any information that will help their child. Most parents start…

The Thinking Person’s Guide to Autism

A Community Book and Blog Project  The Thinking Person’s Guide to Autism (TPGA) is the book and website we wish had been available when our children with autism were first diagnosed. We want to help people with autism and their families make sense of the bewildering array of available autism treatments and options, and determine which are worth their time, money, and energy. Think of us as a little bit of Snopes for the autism community — trusted, accurate, and friendly. Our essays will cover informed approaches to autism and autism treatments, as well as the personal experiences of people with autism and their families. Our attitude is cautionary yet loving — we’re  honest, but we’re not interested in negativity. We envision TPGA as a community-based effort, with the very best writing on evidence-based approaches to autism from autistics, family members, and professionals. If you have something to say about…