Puberty

Musings of An Aspie: One Women’s Thoughts About Life On The Spectrum, is an amazing resources to understanding autism. In today’s post I am going to summarize this women’s suggesting of helping girls with autism go through puberty.   

1.     Talk to your daughter about hygiene, explaining where body odor comes from and why. Talk about sensory issues by asking questions surrounding products such as deodorant, and tampons and bras. It may be that something like deodorant smells to strong or feels stick, but it can be awkward for a child to bring these things up.

2.     Talk about social skills, including was people express interest in each other (both verbally and nonverbally). Talk about how to say no. Explain flirting. Explain space and boundaries. And talk about the different types of touch. Continue this conversation through high school.

3.     Understand and help your daughter understand that hormones are changing and this can seriously throw things out of whack. The author explains that she never had a full-on meltdown until puberty.

4.     Let your daughter know she can ask you about anything, no matter how silly, strange, uncomfortable or obvious. Perhaps give her the option of writing her questions to you, even if she is normally verbal, this can help and give her something to keep and re-read.

No question that puberty is a confusing and difficult stage for nearly everyone. I was interested in learning some of the things that teens with autism may experience in addition to the normal challenges of change.

Visit this informative and well done weblog at:

http://musingsofanaspie.com/2013/08/30/beyond-the-talk-what-else-autistic-girls-need-to-know-about-puberty/

Identity and Reality

The Autistic Me describes himself, “At birth, doctors suggested I would be mentally disabled, in addition to the physical injuries I suffered. I have never been described as normal. “High-functioning autism” (HFA) is just another way to describe a few aspects of “me”. The autistic me is the creative me, the curious me, the complete me.

This introduction sent my mind into a flurry trying to determine what labels, characteristics, and attributes create me, and what I falsely carry, and what I strive to adopt. I’ll save that introspective rant for another place and time. But I do want to surface the concept of identity and self-acquaintanceship to keep in mind during this exploration of autism.     

“The Autistic Me” is a teacher and writer, which his blog largely reflects. On June 17^th, his tone differed slightly as he covered “Abuse and Autism”. He cites a survey that suggests that, “Half of [UK] autistic adults were abused by someone they trusted as a friend. “The Autistic Me” wrote, “I'm less and less trusting, but it took me more than 40 years to realize how many people have no moral compass. I still make mistakes, assuming the best of people and their intentions.”

Hands down, the weak and different will be bullied. It will take conscience effort to stand up with the oppressed before anything changes. So let’s identify as human and take a stance for equality*

*In these posts it may seem that I am attempting to make the playing ground level at the cost of minimizing the challenges autism brings with it. This not my intent. My intent is to bring awareness to the challenges people with autism face as well as their unique strengths WHILE acknowledging the commonalities we all share as members of the human race and calling on the commonalities to understand/embrace the differences.

"I can see yur DNA"

Today I will be referring to the web log Whitterer on Autism.

In her posting, this mother of a son with autism explains that joint attention is one of the “hallmarks of autism”. As a parent she acknowledges how easy it is to forget that her son does not have this skill of joint attention. She outlines, in an entertaining and personable way, three ways in which this can create issues in communication:

1.     “Don’t acknowledge”-The parent of a non-verbal child, or a child who chooses not to speak out when his parent is calling for him cannot respond with a quick wave to let the parent know where he is. One reader commented, “When looking for mine those times he’s wandered away, knowing he can out run you and not respond… is probably the worst part.”

2.     “Cannot point”.

3.     “Can not follow hand leading”.

The author concluded her blog with the insightful antidote; “It happens most days one way or another, something that pulls me up short because I forget that they think so differently from me. Today as I reached over the sofa towards him, hand extended, called his name, beckoned with the other arm, he responded. He leapt onto the sofa and hung upside down over the back to examine my hand from underneath; an upside down aerial view. Silent. He moved each digit, an engineer checking the joints, fully functional, no creaks. He traced the lines on my palms and whorls on my fingertips, “mom?”
“Yes dear?”
“I cun see yur DNA.”

This posting proved a great reminder to me that the way I perceive the world is not universal, and I must actively work at understanding other people’s perspective; be it the difference between someone with autism and someone without it, or the differences between me and each of the other 7.something billion people on this earth.  

Please visit: http://whittereronautism.com/2009/12/autism-%E2%80%93-back-to-basics/ 

to read well written, informative, and entertaining posts. 

From the Parents

Today’s journey took me to the annoyance and frustration parents of children with autism feel when hearing the same phrases over and over again. “Autism Daddy” is a blog written by a 44-year-old father of an 11-year-old son with autism. In February he posted a list of frustrating things people say. The response from other parents of children with autism added to the list. I’ve chosen a handful to share here:

1.     “Even typical kids do that…”

2.     “Did you see the autism report on the news…”

3.     “Awww but he’s so cute…”

4.     “What do the doctors have to say?”

5.     “I don’t know how you guys do it…”

6.     “They might grow out of it”

7.     “You must be parenting him wrong at home”

8.     “She doesn’t look like she has Autsim”

9.     “God won’t give you more than you can bear”

1.    “You’re the strongest person I know”

I can only imagine how tiring it is hearing these phrases everyday. Through reading the comments and other post it is clear that parents are not looking for praise or pity, but want to be treated like other parents, have a conversation about their child like you would any child, talking about normal kid things (how fast they grow, how they don't like school, about fighting with siblings, their achievements and activities). Parents on the blog described being stared out all the time. They expressed frustration from bystanders offering advice and acting the expert. They said that what makes the most differences is people offering genuine help and most of all people who don’t judge. This last point was the takeaway point for me - DON'T JUDGE. Something that I need constant reminder of. 

I highly recommend visiting Autism Daddy: http://autism-daddy.blogspot.com/

It provides great insight into the life of a parent of a child with autism.

Nikolai

Dave’s Facebook (FB) page “Triplets with a Side of Autism” is a beautiful insight into some of his family’s daily joys and struggles. A posting on the page is a photo with all three newborn boys in a crib, the caption reading, “Day 1: In the beginning it was easy, they were only known as A, B & C. No autism, no names, no fighting, no homework.... These were the best of times, we had nothing to fear.”

The fear, the fighting, and the homework came later. When I first talked to Dave one of the most stressful things for Nikolai was school. Getting to school was a fight. Behaving/learning in class was difficult to say the least. And homework was pulling teeth. Thankfully, shortly after I met Dave, Nikolai got accepted in Accelerated Schools in Denver. Relief and fear were simultaneously and fiercely present . Was this school really going to be different??... YES! So far it seems as though the school has been a great fit for Nikolai. The FB page is full of encouraging stories and photos.

Another interesting thing I learned about Nikolai on the FB page is that cutting gluten and dairy from his diet greatly helped his health holistically (behavior, physical, etc).

Please visit the Facebook Page at https://www.facebook.com/tripletsautism?fref=ts to learn more about Nikolai and his family.

And if you feel inclined to donate to help Nikolai receive the supplements the doctor recommends (as well as other unmet needs) please visit: https://www.giveforward.com/fundraiser/3zz5/nikolai-s-gap-fund?utm_source=facebook

Background

In a recent discussion with my friend Dave I mentioned wanting to learn more about Autism. Dave responded saying something along the lines of, “We [my wife and I] don’t know autism, we know Nikolai”. Nikolai is their 9 year old son who was diagnosed with autism at age 3.

Autism Speaks defines Autism spectrum disorder (ASD) as “complex disorders of brain development. The disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors”. For more information on ASD visit www.autismspeaks.org .

Hearing Dave’s words in my head as I read this definition of Autism magnified the fact that each person is unique and therefore faces different challenges in life and has different strengths to overcome such challenges, despite the label they may have to wear. And so, in my pursuit of “wanting to learn more about Autism” I am setting out to learn more about specific people and their experience with the disorder. I anticipate learning about certain personal characteristics, obstacles and challenges, as well as strengths and resources.

Please feel free to share any experiences you may have here on this blog.