Excerpts from the book – (10% indicates location in the Kindle version of the book, instead of page numbers).
10% When we teach our children and ourselves this is right and this is wrong we start seeing it and feeling it where before we hadn’t. Stimming, rocking, flapping, jumping, flicking, poking, clucking – and more – are common with our autistic loved ones, and there is nothing wrong with them. Until we say that there is.
Then we begin an unfortunate feedback loop where we see it as wrong, they see it as wrong, and what used to feel good (or else why would they do it?) becomes something they dislike about themselves. Social rules exist for a reason… they are helpful.
Feel free to show your family why flicking a stranger’s hair won’t help them make friends and might make the stranger nervous.
11% One morning not too long ago, my youngest son got up at six am, made himself some breakfast, got dressed, brushed his teeth, deodorized and combed his hair. Then he stepped outside to play with the dogs. That was when I knew he was struggling with going to school.
Declyn is not for sure autistic, but he struggles intensely with social transitions. He brings home report cards with all A’s; he is popular with his peers as well as with his teachers. Everyone just loves him!
But very often the stress of being that guy surrounds him like a fog, and he just can’t see his way out.
Each new doorway of social interaction exhausting him emotionally. Playlands and parties are also anxiety builders and, success wise, hit or miss.
< My Thoughts > We don’t want to change them, but neither do we want to exhaust them emotionally.
Smith & Sharp (2013) when interviewing a young woman with Asperger’s found that she thought… “It would have saved a lot of the wondering ‘what’s wrong with me’ and I could have learnt to cope with things better sooner.”
11% This day, when Declyn came in after playing with the dogs he looked at me and said, “I just can’t go to school today. I have low self-esteem, and my elbow hurts.” Yea, so he stayed home.
< My Thoughts > “…I have low self-esteem, and my elbow hurts.”
How endearing is that statement! Myers, et al. (2011), tell us that when a child feels clumsy or not feeling popular that day, they tend to socially isolate themselves. This in turn leaves the child facing bullying and further social exclusion by their peers. We don’t want to ‘fix’ them, but we do want to reduce the likelihood for later depression, anxiety and other uncomfortable states.
12% Parenting, autism, happiness – these have become things about which people tend to come to me for advice, and I gladly give it. Some days I feel confident that my ideas are quite useful.
< My Thoughts > “Parenting, autism, happiness…”
An article by Jane Johnson, managing editor of Autism Research Institute (2013), she quotes another author Fingerman (2011) who says, “Parents are only as happy as their unhappiest child.”
It took me years to believe in my brothers. Does that sound like someone to ask autism advice from? On Happiness: Passersby like to ask, “Why are you always so happy??”, and my stock response is a chirpy, “Caffeine!”
< My Thoughts > “It took me years to believe in my brothers.”
Tozer & Atkin (2015) caution that… “Relationships (with siblings with autism or severe learning disabilities) are not without ambivalence, because of the changing demands of persons with autism.” Some of their article’s examples are given here:
“”You love them to bits, but a lot of the time you are thinking… this just isn’t rewarding, this is just hard.”
“She’s my sister, I love her, but she cannot understand the way I think… and I can’t understand the way she thinks.”
“I decided I was an adult by the time I was twelve because I was parenting the whole family. Sleepless nights, worrying what was going to happen…”
“I was the one who had to adapt to ‘autism-friendly’ routines. Many days, he’d be running around, pulling the curtains down, scribbling on the walls… flooding the bathroom… chaotic, yeah.”
In this article, siblings described the long-term impact of autism on family life. The article talks bout staying constantly on the alert as to what was going on… continual hyper-vigilance. Most siblings expressed “sadness and frustration at the limited reciprocity in the relationship with their sibling.” Plus the siblings trying to balance the demands of family time with their personal time.
18% I am a Canadian white woman with a tree hugging granola crunching soul, married to an older black man who has never gone camping and thinks orange soda is healthy. We both hate guns, don’t drink and chose not to spank our kids. Our home is a very comfortable place where passionate arguments are sometimes learned from and always respected.
I try to create a culture of thinking for ourselves, learning from others and ourselves, and sharing what we learn without apology or assumption. I appreciate all the triggers that have helped me change my mind…
13% Also, I am the sister of brother who were on the spectrum and for years I’ve been mom’s right hand man. Though I didn’t always understand or believe in my brothers the way mom did, I learned to.
19% My mom was special needs and saw things differently… there was no doubt that she was different. So when she adopted four boys from abused homes, with different challenges and needs, and insisted the world not pity them but rather believe in them and adore them while having expectations, the culture in my home clashed noisily with the culture outside of it.
< My Thoughts > “…believe in them and adore them.”
In his 2013 book, Daniel Siegel, M.D. specifies that “Family support gives teens a good sense of who they are…”
That it is important to have strong relationships with parents, extended family, and their families’ friends. Then even though the child may have a “disorganized narrative” in their model of attachment, they have a better chance of interpreting the world as a balanced one.”
19% For years I took turns being angry or embarrassed by my mom, and then angry and unhappy with the world. But because I love my brothers – and because my mom was right – I was eventually able to see…
From – Parents Aren’t Victims of Their Kids, by Ally Grace; Respectfully Connected, 2016.
“It took me until I was in my 20’s to realize what was going on. Until then I had run around trying to not upset her, and my siblings and father did this too. It took a lot of effort and brain space! The whole family believed we were selfish and that we needed to protect her! When I did eventually speak up, my family tried to shush me and told me I was ‘upsetting mum’.”
19% My mom taught us never to allow our beliefs and limitations to come from others.
27% Perhaps in learning to trust and be ourselves we can actually make safer choices. Ones that come from what we truly want, and not from a place of fear. Fear of being hurt or judged. The energy we put out is most often the same energy we call to ourselves. That’s what I believe.
< My Thoughts > “…choices…not from a place of fear.”
Somewhere I read that children may develop emotional difficulties or a sense of ‘self-distrust’ when making choices based on what is seen as their limitations. This makes perfect sense to me. Fortunately, Tsara’s mother Lynette taught her family to see beyond a world with few choices and Tsara has carried that wisdom along to her family. Smiles.
27% So I will continue to smile at strangers and sing to myself while walking down the street. That is who I feel good being. That is being me!
32% Autism is a funny thing. You can’t see it. It’s very much the same symptoms in individuals (communication difficulties, social disorder, repetitious behaviors and sensory sensitivities) manifesting vastly differently in each. Something people are choosing to take advantage of ‘autism’ as an excuse.
< My Thoughts > “Something people choosing to take advantage of ‘autism’ as an excuse. “
Outsiders may see ‘Autism’ as an excuse for creating what they see as a ‘spoiled’ child… or for poor parenting… or just for not putting forth the effort to change. Ugh!! I say at the top of my voice “Define a spoiled child”… define “poor parenting!”
34% Sometimes my mom would stand up in the middle of a conversation at a coffee shop and exclaim, “It’s too cold. I have to go now.” No gradual easing into it. Just “Gotta go now.” What we didn’t know at the time was that up until that point she had been dealing with a myriad of sensory overload. She couldn’t tell us because as far as she knew the world she was experiencing was the same as ours.
< My Thoughts > “…as far as she knew the world she was experiencing was the same as ours.”
‘Theory of mind’ (ToM), which is not yet fully developed, lets the person believe that others think, understand, and perceive the world exactly as they do. They do not realize that different persons have different thoughts, desires, beliefs and attitudes by which they make sense of the world they live in. This is common in Asperger’s.
2% My mom was recently diagnosed as historically Asperger’s… one of the manifestations of autism. But she doesn’t have it anymore.
34% Having an undiagnosed autistic mom taught me to be fair, kind, and unassuming. It taught me to see outside the box, because a box is no place for a person. Facebook Motto: Autism asks challenging questions, begs us to think outside the box and then, autism answers.
86% I grew up the oldest of eight children. My mom adopted six wild and wonderful, abused and challenged kids. My four adopted brothers had labels that ranged from autistic to angry.
I rolled my eyes when my mom would insist that the boys were able to feel the same feelings as me but that their challenges meant the feelings would show up in different places and would probably looked different.
< My Thoughts > “….feelings would show up in different places.”
In the study described by Shalom, et al. (2006), the participants with autism who could express themselves about feelings stated the following – “They mostly only had ‘conscious’ feelings about things which were ‘pleasant’ versus ‘unpleasant’ or, ‘interesting’ versus ‘boring’.
86% What I say was one brother rocking, stimming, growling and hitting himself, another staring blankly in whatever direction he was facing, forever needing to pull up his socks, another threatening to beat up whoever was nearest, avoiding eye contact like the plague, and the little one repeating whatever you said while climbing the walls and putting his lips on heaters.
Even the professionals in our world kept trying to tell my mom to stop getting her hopes up with these kids…
< My Thoughts > “…stop getting her hopes up…”
The best advice I’ve seen out there states that parents should remain hopeful, educate themselves in order to become empowered, and to find professionals who are willing to ‘partner’ with them in the planning and interventions ahead. While most parents tend to seek out others who have had successes, vigilantly researching is not to be ignored, in my opinion.
90% Funnily, I used to wonder if there was something wrong with me… People who knew me growing up, as well as people who know me today, use words like ‘satisfied’, ‘happy’, ‘sweet’, positive’, and ‘bubbly’ to describe me. But as it turns out, I’ve got a pretty balanced brain.
Eventually, in search of a tool that could help Dar, my most severely autistic brother, my mom discovered neurofeedback. A tool that would, essentially, save all of us from a life of floating and wondering and searching. Neurofeedback is truly wonderful. Putting nothing in the body but information, and offering feedback (in the form of beeps) that helps balance the brain nearly the instant the brain behaves in the way it’s encouraged to.
Both mom and Dar benefited so quickly, and in such surprising ways, it became a passion project for mom. To help the family, to certify and educate, and to help families around the world.
I got to have a turn with her brain reading and balancing buddy. I’ll admit it, I was nervous. I was being silly because all it does is just read delta, theta, and beta brain waves. It doesn’t judge at all. Well, my mom found my brain to be kind of boring! Turns out, it’s rather balanced.
< My Thoughts > “… it just reads brain waves… it doesn’t judge…”
Steiner, et al. (2014), in reward for careful concentration… “The computer interface provides children with constant and immediate auditory and visual feedback about their success in paying attention.”
93% We – myself, my mom, and my son – have always had a pretty clear picture of who we wanted to be. And it’s been fascinating and fun to see clearly that our dreams have come true. Even if they look different that when we once dreamed them.
< My Thoughts > " Even if they look different that when we once dreamed them."
Cascio, Ariel (2015), believes that how we treat people with autism in our society is somewhat a cultural thing. She tells us that varying cultures have varying opinions. Americans probably have some version of all considerations. Some cultures want to bridge the gap between achieving independence and accepting life in custodial homes. Others see this community as sick and needing to be healed. Some feel that they will do whatever it takes to avoid mental suffering. Some have rigid concepts and interventions. While still others classify those with autism as a therapeutic/custodial population.
99% In my articles and essays I mention autism – a lot. If you are interested in more information… please visit www.brainbody.net. Or, Lynette Louise aka the Brain Broad on the autism channel.
34% I am proud that my mom has been able to turn her passion for autism and fairness into an international autism/brain expert career, one woman musical comedy show, books, and internet reality show (on the Autism Channel).
< My Thoughts > '...proud of my mom...'
Tsara is a great talent in her own right... with essays, poems, and songs galore!
See more of her on www.tsarashelton.com
REFERENCES used in < My Thoughts > are:
Meyers, J., Ladner, J., Koger, S. (2011). More than a Passing Grade: Fostering Positive Psychological Outcomes for Mainstreamed Students with Autism; Journal of Physical Disabilities; Vol. 23, p515-526.
Shalom, B., Mostofsky, S., Haxlet, R., Goldberg, M. (2006). Normal Physiological Emotions but Differences in Expression of Conscious Feelings in Children with High-Functioning Autism. Journal of Autism & Developmental Disorders; Vol.36:3, p395-400.
Siegel, D. (2013). Brainstorm: The Power & Purpose of the Teenage Brain; Tarcher Book Publishing.
Smith, R., & Sharp, J. (2013). Fascination & Isolation: A Grounded Therapy Exploration of USE in Adults with Asperger’s; Journal of Autism Developmental Disorders; Vol. 43:4, p891-910.
Steiner, N., Frenette, E., Hynes, C., Pisarik, E., Tomasetti, K., Perrin, E., Rene, K. (2014). A Pilot Feasibility Study of Neurofeedback for Children with Autism; Applied Psychophysiology & Biofeedback; Vol. 39, p99-107.
Tozer, R., Atkin, K. (2015). ‘Recognized, Valued & Supported’? The Experiences of Adult Siblings of People with Autism Plus Learning Disability; Journal of Applied Research in Intellectual Disabilities; Vol. 28:4, p341-351.