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Talking About Autism, Disability, & Hygiene

Shannon Des Roches Rosa www.squidalicious.com Most parents fret about their kids’ hygiene and how it is affected by factors like circumcision, tooth brushing, or toilet training. Said fretting escalates when the kids in question have a disability, but hygiene doesn’t have to be the skunk cabbage in the parenting bouquet — not if parents do their best to understand why hygiene can be complicated, take cues from self-advocates with insights parents and professionals cannot provide, encourage self-care, recognize that not all hygiene needs will be rooted in disability, and help make self-care part of a routine. Circumcision is a standby topic in parenting circles. Arguments both for and against the snip invoke culture, religion, sensation retention, or wanting Daddy to have a penis twin. But few mention the possibility of conditions like cerebral palsy or the fine motor challenges that often accompany autism, and how those affect uncircumcised penis care.…

Autism and the New DSM-5 Criteria: Who Will Be Left Behind?

Emily Willingham www.emilywillinghamphd.com When news broke that the autism spectrum categories of Asperger’s disorder and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) would get subsumed into the wider maw of a general “autism disorder,” people worried. They worried about autistic people who are quite verbal or who have typical cognitive skills. What would happen to individuals whose autism doesn’t manifest in those terms as profound? The biggest concern was a new category for the Diagnostic and Statistical Manual of Mental Disorders (DSM)-5, social communication disorder. Would people like my son, diagnosed with Asperger’s and whose autism includes echolalia, anxiety, motor deficits, repetitive behaviors, learning differences, and other features well beyond the social, get rolled into what looks like a flimsy, catchall not-safety net of “social communication disorders”? And what other kind of communication is there if not social? Based on early reports, the concerns were legit. One alarming presentation at a…

Hurricane Sandy Means Emergency Needs for Autistics & Special Ed Students

Hurricane Sandy disrupted so many lives and displaced so many people in our autism, disability, and special ed communities. Many of those affected are still struggling to bring routine, safety, and necessities back into their lives — and not all who need assistance are getting the support they need.  Here are two personal accounts about what’s not working right now in Sandy’s aftermath, what needs to change, and — for those who want to help — how it’s so much more important to donate money than goods. Carol Greenburg aspieadvocate-ascd.blogspot.com I am the autistic mother of an autistic 10-year-old. I want to share something that happened in the aftermath of Hurricane Sandy. My son, who has not had school or therapy for a week and is disconsolate over the disruption of his routine, finally had some therapy scheduled for this morning. Public transit is not yet well restored enough in…

Interview: Amy Sequenzia on Facilitated Communication

Amy Sequenzia is an autistic self-advocate and poet. She types using Facilitated Communication (FC). She talked with us about what FC allows her to do, and what she would like people to know about it. What does Facilitated Communication (FC) mean to you? Why does it work for you? FC is how I can make my voice heard. I can say what I think, how I feel and I can be active in conversations, instead of being a passive observer. It works for me because nothing else did. My body can be very uncooperative and my mind can go from very active and unfocused to focused and calm — and back — in a very short time. It helps to have someone close to me for support, encouragement and to help me focus again. Physical support is important when I get spastic and when my arms get too heavy for…

Behavior Policing’s Effect on Autistic Children

Michael Scott Monje Jr www.mmonjejr.com Growing up, I might not have had an autism diagnosis, but that does not mean that my parents were oblivious to the differences between my behavior and typical behavior. Sure, when I was very young, they made their mistakes. For instance, my mother thought that the fact that I would sit for hours, focused on my own thoughts, made me an “easy” child. In some ways it did, because that meant that she could leave me unattended and run downstairs to change the laundry without worrying that I’d wander off. To a nineteen year old with a toddler, I’m sure that that had to seem like a blessing at times. Similarly, when I was two or three and I started to get obsessed with organizing and arranging things, that made my parents’ lives easier. After all, a child that can be kept busy sorting a…

Hurricane Sandy: Autism Experiences, How to Help

Were you affected by Hurricane Sandy? How are you doing? If you were not affected personally, do you know someone who was? If they are autistic, have you checked in on them? Do you know of additional ways for non-locals to help out besides donating to the Red Cross? Update 11/3: The sites Sailing Autistic Seas and Love That Max have put together lists of resources for our communities, please share widely (some are family-focused, others are all-ages, if you know of anything they’ve missed, please let them or us know. -SR) Sailing Autistic Seas: Hurricane Sandy Resources Love That Max: Disaster Relief for Families of Kids With Special Needs Here are three on-the-ground reports from autistics and autism families. If you know of other stories or want to add your own, please do so in the comments. Carol Greenburg @AspieAdvocate tweeted her traumatizing but necessary trip into Manhattan from…

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Autistics Speaking Day 2012

And you really need to go to the Autistics Speaking Day website to see all the amazing posts that have already been put up, as and also following the @AutisticsSpeak Twitter stream. TPGA Contributor & Self-Advocate Lydia Wayman, representing. For those who would like history as to why this day matters so, please read ASDay co-founder Corina Becker’s TPGA Post The Beginnings of Autistics Speaking Day. Contribute contribute contribute! Spread the word! Boost the signal! Be as loud as your or your hands can be!

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Trick-or-Treating, TPGA-Style

Our community: All trick-or-treaters welcome, everyone who wants to participate, does. It’s Halloween! Are you or your family going trick-or-treating? Some of our families have it down to a successful science, and follow the advice from our perennial TPGA Halloween  post: Do you think your child will enjoy trick-or-treating, but are worried it may not be appropriate for them? If they tire easily, or have easily-triggered and unpredictable meltdowns, then plan a limited route close to home, or have another adult trail your crew in a getaway car. If your child has limited mobility or is in a wheelchair, scope out your trick-or-treat route ahead of time so you can note non-accessible houses and avoid them. Please let us know your own Halloween tips, tricks, and successes. We hope your Halloween is a good one. —- We’ve kept this short, because our thoughts are with those of you who are…

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Conversations Between Autistic Self-Advocates and Autism Parents – Part 2

Self-Advocate Elizabeth (Ibby) Grace’s blog Tiny Grace Notes is subtitled “Ask an Autistic,” and that is exactly what people do — solicit Autistic insights from her. We asked if we could republish a recent conversation Ibby had with Tina, an autism parent — to show that these conversations do happen, that they can be fruitful, and in the hopes that more such exchanges will happen. This is part 2 of 2. We recommend reading Part 1 first, for context. —- Tina writes: I’ll try to answer your questions. I’m glad you asked all these questions. I dont know how many I can answer but am trying to answer them. J likes pizza, it’s the only thing he’ll eat. He strips the cheese off, eats that first then licks the tomato sauce off then scrapes the soft doughy part with his teeth and leaves the outer crust and what’s left of…

Conversations Between Autistic Self-Advocates and Autism Parents – Part 1

Self-Advocate Elizabeth (Ibby) Grace’s blog Tiny Grace Notes is subtitled “Ask an Autistic,” and that is exactly what people do — solicit Autistic insights from her. We asked if we could republish a recent conversation Ibby had with Tina, an autism parent — to show that these conversations do happen, that they can be fruitful, and in the hopes that more such exchanges will happen. This is part 1 of 2. —- Tina: I have a question. I have a severely disabled son. He is nonverbal, is still in diapers, has self harming behaviors, hits himself in the face repeatedly and eats with his hands. I doubt he will ever progress to the point of living independently. I just can’t imagine that ever happening as he’s already 12 years old and only in the last year has he indicated that he understands what I mean when I ask him if…