The Highs and Lows of Functionality

Another perspective on autism, and I love it! I want to ask your permission to translate this great post to Bahasa Indonesia and share it on my facebook…

Autism and Expectations

I want to talk about my relationship with the functionality of Autism. This is not based on research. This is not based on how I compare myself to other autistic people, and how we fit on some imaginary scale of usefulness. This is just about me.

I don’t like the term High Functioning. Perhaps it’s partly an instinctive reaction. It sounds snooty. It sounds arrogant. It sounds aloof and cold. And these are all things that I’ve been assumed to be, because I don’t project my emotions the way neurotypicals do.

I don’t like the term because it suggests that I’m on a separate plain to the Low Functioning Autistic. I don’t like it because it belittles how much effort I put in to functioning. It makes it ok to brush my needs off as already dealt with by me.

I don’t like the term because I hear these words…

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Stimming and Escaping

Ini sebagian diskusi di website Putera Kembara (arsipnya di: . Topiknya seperti judul postingan ini. Tapi saya ambil sebagian saja, karena bagus banget untuk reminder.

Anak ASD itu kan memiliki problem keterbatasan dalam interaksi &

perilaku sosialnya terutama dalam

– memahami konsep2 ‘sosial’ yang abstrak, seperti perasaan (feeling),

bohong/jujur, sopan/tidak sopan, sayang, kangen, kecewa dll

– memahami gradasi emosi, misal marah besar vs marah vs sebal vs

terganggu dikit tp belum marah vs sebal tp lucu (senyum kecut) dll

– berempati pada perasaan & sikon orang lain

– mengekspresikan & berbagi perasaaan serta pemikirannya dengan orang


Jadi kalau orang ‘normal’ pintar sekali cari beribu alasan berlainan

sesuai sikon org yg dihadapi yang semua pada intinya escaping behavior

tsb, maka anak ASD dengan keterbatasannya baru mampu mulai dengan yg

dia tahu & sudah coba sebagai efektif & tidak terpikir olehnya (sampai

diberi tahu atau dicoba sesuatu yg baru) untuk menciptakan sendiri

escaping behavior yg baru. Continue reading

Derita Hidup

By Henny Wirawan

(Tulisan ini saya kutip seijin Ibu Henny Wirawan, psikolog, dari facebook beliau)

Untuk yang kesekian kalinya saya mendengar (tepatnya sih membaca) keluhan seperti ini, “kenapa sih mama saya selalu membuat kesan kalau saya yang salah? Beliau yang menjatuhkan kemudian memecahkan tumbler yang saya tabung dengan uang sendiri, dan barang limited edition juga, malah saya yang disalahkan. (…) Bukannya meminta maaf, malah saya yang dicaci maki oleh beliau. Ketika saya kesal dan masuk ke kamar, malah diancam, ‘Di kamar saja terus seharian. Jangan pernah keluar lagi!’ Ponakan saya saja bisa meminta maaf jika merusak atau menyakiti saya.”

Pertanyaan lain yang dibacanya juga mendatangkan rasa sesak di dada kurang lebih seperti ini, “Bu, kenapa mama aku selalu punya hati untuk menghancurkan saya? Saya itu jahat apa sih ke dia? Saya itu justru mau tolongin dia, tapi kenapa sampe bahasa yang orang bodoh pun mengerti, dia tetap tolak?”

Keluhan lain yang tidak kalah menghancurkan hati kurang lebih seperti ini, “Aku merasa sudah melakukan yang terbaik versi diriku sendiri tapi keluargaku di rumah seperti tidak pernah puas dan selalu membandingkan. Padahal aku melakukan itu semua, selain karena memang aku suka melakukannya, juga karena demi membuktikan kalo aku bisa. Tapi aku ngerasanya kaya bego amat. Tiap hari selalu dibilang salah. Ada aja yang salah dari diriku untuk diomelin. Sampe mikir, sebnernya aku ini anak yg membanggakan apa memalukan sampe tiap hari kok salah terus?” Continue reading

Quiet Hands

So sad… but true.

Just Stimming...

TW: Ableism, abuse

Explaining my reaction to this:

means I need to explain my history with this:

quiet handsquiet hands1.

When I was a little girl, they held my hands down in tacky glue while I cried.


I’m a lot bigger than them now. Walking down a hall to a meeting, my hand flies out to feel the texture on the wall as I pass by.

“Quiet hands,” I whisper.

My hand falls to my side.


When I was six years old, people who were much bigger than me with loud echoing voices held my hands down in textures that hurt worse than my broken wrist while I cried and begged and pleaded and screamed.


In a classroom of language-impaired kids, the most common phrase is a metaphor.

“Quiet hands!”

A student pushes at a piece of paper, flaps their hands, stacks their fingers against their palm, pokes at…

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Autism and the Inclusion Mandate


“Worst practices in inclusion” include:

• Insisting on inclusion at all costs.

• Settling for a mere physical presence in the classroom.

• Giving priority to the inclusive education model over the individual needs of children.

• Providing little or no training to staff.

• Keeping the paraprofessional out of the loop.

• Teaching rote information so that the student can pass mandated tests instead of teaching needed skills.

• Watering down curriculum.

• Failing to teach peers about the nature of disabilities and how to interact with peers who have a disability.

Daniel walks into his kindergarten classroom and drops his outerwear, backpack, and bus harness in a tangled heap in the middle of the floor. Daniel has a singular focus this morning: building a bridge and a house out of Lincoln Logs.

He does not notice as classmates step around or over him as he plays on the hard floor. If other children move into his space, he pushes them away. One or two children greet him, but he does not answer. Daniel keeps up a running dialogue as he plays, in jargon rarely understandable to anyone but himself.

Daniel’s educational aide approaches him and, using a handmade schedule book with symbolic pictures, shows Daniel that this is not the time for playing. The first picture on the schedule is a locker, indicating that Daniel is to hang up his coat and backpack. Transitions to new activities are very difficult for Daniel, and he begins to scream and kick. Other children watch quietly or walk away.

Daniel is autistic. He is charming, intelligent, creative, and full of energy, just like his 18 classmates. However, he is unable to use language to interact with others. His rare attempts at communication are through imitation and usually in only one or two words. Teachers and aides communicate with Daniel using a combination of picture symbols and words, since children with autism learn best visually. Like other children with autism, Daniel would not understand the activities of the day without his schedule book. When events change and the day does not correspond to his schedule, Daniel may lose control and throw a tantrum. He requires the support of an educational assistant every minute of the school day. Continue reading

Full Moon and Autism: Is There a Connection?

Perfectly Quirky

Now, I don’t want to sound a little crazy, but I am really starting to wonder if the moon cycle plays a role in my son’s all around behavior and ability to function at his best. Sometime last summer, when S’s new teacher started, I remember complaining about S having a rough few days. Her reply? “Well, it is a full moon.” I sort of laughed, as I thought she was joking. She wasn’t laughing though, and she told me that in her many years as a teacher, she has become convinced that the moon’s cycle has a strong effect on children with ASD and those with ADHD.

And so, as months would go by, I would notice that on days where S really seemed to be having a bad day, there would be a big white ball in the sky. He tends to have a harder time transitioning, a more…

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