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Extended Book Reviews with < My Thoughts > by Sara Luker

The Aspie Parent: Writings from the Blog by Liz Cademy eBook 2013 Edition; an Extended Review with < My Thoughts > by Sara Luker

2/2/2018

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​The Aspie Parent, Writings from the Blog: the First Two Years A Collection of Posts from the Aspie Parent Blog by Liz Cademy, eBook Edition 2013 Edition; an Extended Review with < My Thoughts > by Sara Luker
 
(8% indicates location in the Kindle version of the book, instead of page numbers.)

< Short excerpt from Liz’s Alphabet Soup >
 
8% - 11%  Hello, before I get into any topics of substance, I thought I would ‘define my terms’, as the professor would say. And, if I use any other terms, I will define them in context in hopes of clarifying the meaning.
 
Alphabet Soup:
 
Aspie and AS – are both short for Asperger’s Syndrome, condition where the brain is wired differently than normal. In severe cases, this rewiring can cause autism, but most Aspies are able to be productive members of our modern world, if seen as a bit quirky…
 
NLD – stands for Non-verbal Learning Disorder… The main distinction is that people with NLD have problems decoding any and all non-verbal information, while Aspies can have excellent visual learning patterns. 
 
PDD/NOS –  is short for Pervasive Development Disorder. NOS – Not Otherwise Specified. In plain English, this means a person doesn’t have NLD, or Aspergers, but definitely has something like them…
 
On the spectrum – a blanket term for anyone who has any autism spectrum condition, mild or severe or anything in between.
 
NT – neurotypical, the term used for people who are not on the spectrum.
 
Gifted, GT –Lots of people with Asperger’s are smarter than average, either in a few areas or overall. The term Gifted refers to anyone of above average intelligence…
 
Twice Exceptional, 2E –  2E simply means a person is both Gifted and has some other issue, usually a learning difference such as AS (Autism Spectrum),  ADHD (Attention Deficit Hyperactivity Disorder), or similar…
 
Special Education, SPED – When kids going to school need services and accommodations beyond the usual… The student is evaluated first, and if eligible, an IEP, Individual Education Plan is prepared, outlining the specific services and learning goals for that student.
 
< My Thoughts >     “…if eligible, an IEP, Individual Education Plan is prepared.”
 
Retrieved from: https://www.understood.org/en/school-learning/special-services/ieps/understanding-individualized-education-programs
 
An IEP is a legally and binding contract meant to address each child’s unique learning issues and specific educational goals. The school must provide everything it promises in the IEP, or the parents have a legal recourse, called Due Process.
 
The IEP provides educational support and services through IEP Modifications & Accommodations which will help your child progress through the educational system. This provision continues for each student who qualifies until s/he reaches their 22nd birthday. IEP Modifications are often paired with IEP Accommodations in order to make learning more accessible, allowing that student to more fully participate in learning and testing of what educational goals have been met.

 
< End of short excerpt from Alphabet Soup >
=============

Excerpts from Liz’s book…
 
5%       This eBook is a collection of blog posts from the first three years of my blog, The Aspie Parent.
 
You will see some references to my children, Ocelot and Climber. These are not their real names, but pseudonyms…
 
Ocelot is a girl, and was in high school when I wrote these blog posts. She’s both highly gifted and has “something” on the spectrum, though not Asperger’s.
 
6%       Climber was in elementary school, and is also highly gifted, but NT (neurotypical)…
 
7%       I am a parent, and I have Asperger’s. One of my kids (who has the pseudonym Ocelot online) has been diagnosed with PDD-NOS, Asperger’s’ cousin.
 
…I realize I have a lot of tips for other parents of kids who are either on the mild end of the autism spectrum or have similar learning differences.
 
As a parent with Asperger’s, I also have stories of times when my AS made being a good mom difficult.
​16%     Labels, Part 1. I am not a fan of labels, for many reasons.
 
Holding too close to a precise label can hurt our kids. Too many school districts will only provide services for students with conditions listed in the DSM (Diagnostic and Statistical Manual of Mental Disorders).
                       
NLD is not listed in the book… so some schools, which may have wonderful programs for Asperger’s, refuse to help kids with NLD.
 
< My Thoughts >      “NLD is not listed in the DSM book…”
 
The latest Diagnostic and Statistical Manual of Mental Disorders (DSM-5) may consider NLD under “Other Neurodevelopmental Disorders”, as it now includes Asperger’s in the ASD spectrum, which would also qualify that student.
 
17%     Labels, Part 2. Another thing that bothers me about labels – some people identify too strongly with the label. What can you do if your school is like this, and your child is affected? I hate to say it, but you and your diagnosing profession should lie. If you (all) know your child will need Spectrum accommodations, have the pro write a “diagnosis” of Asperger’s or HFA (High-Functioning Autism). This will get your kid the help s/he needs.
 
And school records are destroyed upon graduation, and are not released outside the school, so the misdiagnosis won’t haunt your child in later life.
 
We want our kids to be multi-talented, productive, interesting human beings, who, incidentally, have some additional challenges related to a learning disability.
 
< My Thoughts >      “I am not a fan of labels.” 
 
The subject of labels is alluded to in many books and may have been overlooked by those new to Autism. Labels can be scary, but usually your child’s AS label can be removed from records when they reach a certain age. Check the laws for your state on this, if you are concerned about early labeling.
 
The problem is that without labeling the insurance companies, educational programs, benefits for children of U.S. military veterans, and many other state and/or federal services will not be available to your child without serious documentation and certification. This puts the burden of proof on you, without it you will be expected to pay, out of pocket, possibly thousands of dollars for services.  
 
Early diagnosis and early intervention seems to be of the utmost importance, according to today’s prevalent thought. Be aware that states differ in the programs available to the younger set and/or school-age children. Search the internet and find out what resources are available to you, in your state. You may live close to bordering states which have better programs and are more accommodating for your child. Some parents have even moved to that state to establish residency, while commuting across state lines to continue working in their job or their career.
 
22% - 24%      <Some excerpts from > Liz’s List of Female Asperger’s Syndrome (AS) Traits:
Appearance / Personal Habits:
  • Dresses comfortably due to sensory issues & practicality.
  • Will not spend much time on grooming and hair. Can be quite happy not grooming at all at times.
  • Eccentric personality; may be reflected in appearance.
  • Is youthful for her age, in looks, dress, behavior and tastes.
  • Usually a little more expressive in face and gesture than male counterparts.
  • May have many androgynous traits despite an outwardly feminine appearance. Thinks of herself as half-male / half-female.
  • May not have a strong sense of identity and can be very chameleon-like, especially before diagnosis.
  • Enjoys reading and films as a retreat, often science fiction, fantasy, children’s, can have favorites which are a refuge.
  • Uses control as a stress management technique: rules, discipline, rigid in certain habits, which will contradict her seeming unconventionality.
  • Usually happiest at home or in other controlled environments.
  • May have been diagnosed as autistic or Asperger’s when young, or may have been thought of as gifted, shy, sensitive, etc. May also have had obvious or severe learning deficits.
  • Often musical, artistic.
  • May have a savant skill or strong talent.
  • May have a strong interest in computers, games, science graphic design, inventing, things of a technological and visual nature. More verbal thinkers may gravitate to writing, languages, cultural studies, psychology.
  • May be a self-taught reader. Being hyperlexic is a syndrome characterized by an intense fascination with letters or numbers and an advanced reading ability.
  • May be highly educated but will have had to struggle with social aspects of college. May have one or many partial degrees of this.
  • Can be very passionate about a course of study or job, and then change direction or go completely cold on it very quickly.
  • Will often have trouble holding onto a job and may find employment daunting.
  • Highly intelligent, yet sometimes can be slow to comprehend due to sensory and cognitive processing issues.
 
< End of excerpt from Liz’s fascinating list, which continues in her book for several more pages.>
 
28%     (Girls are) less likely to receive a correct diagnosis because the criteria is based on male behaviors / traits. (Hans Asperger, for whom this is named, studied males only.)  
 
34%     Parenting Tip: Don’t Ask Why? This one’s a short tip – when possible, avoid asking your child ‘why?’ questions regarding motivation or reasons ‘why?’ s/he did something.
 
Often a parent’s ‘why’ questions are judgments of the kid: ‘Why’ did you hit your sister? ‘Why’ did you climb on the rocks after I told you not to?
 
35%     Most of these questions can only be answered by a variation of “It seemed like a good idea at the time,” which is not what we parents are looking for.
 
So what can you ask instead? To get your child to understand his/her own motivations? 
 
“…Let’s look at the rocks – they’re wet. Do you think wet rocks might be slippery? Yes, they are more slippery than dry rocks.”
 
“What would happen if you slipped on them? Can you see why I didn’t want you to climb them?” 
 
This gives the kid a deeper understanding of the situation, one they can use to think through other things.
 
< My Thoughts >      “So what can you ask instead?”
 
Greene (2016) helps parents operate with a similar mindset. Similar to Liz, he tells us how to teach the child to identify and solve the problem of living up to another’s expectations. He also asks “Why do we put so much energy into asking the child ‘why’ when we know it never solves the problem?”
 
He offers, “Your child, at times, may appear as though s/he is actually capable of meeting a given expectation because s/he sometimes does. Often this leads the adult to believe that the child can meet the expectation when s/he feels like it.” “I know s/he can do it… s/he did it yesterday!!! 
 
< Wow! I can’t tell you how many times teachers experience this in the classroom!! >
 
Greene continues… Instead of asking the ‘why’ question, ask… “Help me understand about the trouble you seem to be having today.” Then try repeating what s/he says… “So, you feel that what’s being asked of you is unfair?” 
 
< Notice that you’re not asking ‘why’ or ‘what’ s/he needs. But you are helping define the problem and leading them towards solving it on their own. You are also digging for information, while trying to find all the component parts of the problem… and getting to know your child and how s/he thinks about things.>
 
Greene feels that… “Kids sometimes need help identifying the problem’s components so they can pinpoint which one is causing the struggle.” So, then you can say… “Let’s take some time to think about ways to make it easier/better for you.” “I’ll come back after I take your sister to her piano lesson and we’ll talk about it some more.” “That way you’ve tabled concerns for a little while so everyone can cool down and come to a mutual solution.” 
 
36%     Aspie Tip: Apologies – Lots of Asperger’s kids (and a few adults) have a very hard time with apologies. They don’t understand others or pick up on the feelings of others; they never do feel true remorse.
 
38%     …parents say they want to know how to teach their AS kids to feel remorse, or apologize with sincerity… The best apology is to:

  • Say the words “I am sorry.”
  • State what you did, and an “I” statement:  “I broke your dish.”
  • Either offer to make amends “Can I replace it?” or ask if you can make amends “I’d like to replace it, can you give me the information I need to buy a new one?”
 
49%     Eye Contact, PhD Level – We all hear how people with AS have poor eye contact. Eye contact skills can be learned…and Eye Contact 101 has become a catch phrase for classes on beginning social skills. 
 
< My Thoughts >      “Eye Contact 101…”
 
Many college towns now have ‘social’ programs available to the community. In our town this very successful program is called a “Sports Social”.  Speech, behavioral, and occupational therapists, facilitate social skills through such things as playing sports or engaging students with board games.
 
53%     …Asperger’s husbands always answer questions “No”, even when they later say “Yes”.
 
54%     …I do this to. …I have what is known as a “negative first reaction”.  If I am at all negative or unsure of my response, I’ll automatically say “no” without thinking.
 
< My Thoughts >      “negative first reaction”…
 
The “negative first reaction” lurks everywhere. I think it may have a lot to do with most people not liking to ‘change’ their thinking about things. Paradigm shifts are pretty unpopular, as a general rule. Just saying. Spencer Johnson’s book “Don’t Move My Cheese” was a best seller for years, mainly because people could relate to how ‘change’ negatively affects them.
 
54%     When my processing catches up with my mouth, I may have thought it through and the answer is “yes”. Or not, but I’ll know why I’m saying no.
 
I think it’s just a less impolite way of saying “I know you need an answer right now. I feel like I’m being put on the spot and forced to give an answer before I’ve thought about the answer, and it’s easier to change from no to yes than the other way around…
 
Much of this is because Aspies tend to have slower processing speed than NTs – we’re not less intelligent, we just think a bit slower. We need to be given time to think before being pressed for an answer.
 
To help cut down on the “no” answers, you need to show your Aspie that you will wait for them to think…    “I was wondering if …”  “I want your ideas on…no rush, I’ll wait for your answer.”
 
< My Thoughts >      “I’ll wait for your answer” (providing wait time)…
 
This usually works for everything and everyone, I think. Many times, students with hyperactivity or attention deficit disorder can’t wait for your response to questions. So it just follows that you would expect the same from them…not true. In fact the opposite is usually true.
 
Leading them to ‘making the idea’ may help.This is where salesmanship is required. When looking for an answer, present your idea as if you were selling a product. And, do it during a time when the person you ask is the most receptive. Personally, my ‘yes’ answering time would be in the afternoon when the majority of my “to do’s” are done. 
 
Another hint is ‘choices’. Say, “I was thinking about…this & this”  “Which one would work best for you?”  And…never assume anything…clarify and verify…clarify and verify.  Have them put it into their own words. What is the choice that they are agreeing to? Let them voice their choice.
 
64%     <From the blog>  Here’s a question Cathy asked: “I’m curious about RTM (Remember the Milk), as my 10th grader really struggles with organization and remembering to turn in his work.
 
65%     He currently uses Google Calendar RTM. The RTM webpage says RTM works with Google Calendar. Can you explain the Benefits of using RTM…
 
I’ll try to explain this quickly…  If you look at the things you need to do, you can divide them into tasks and events.
 
Events are linked to a specific time/date, such as Math Class or Daniel’s Party. Tasks may have deadlines, but you can do them at any time before (maybe after) the deadline, such as Chapter 8 History Homework, due Friday.
 
Google Calendar is great for events, Remember the Milk (RTM) is designed for tasks. I like keeping the two separate, so I use both programs.
 
< My Thoughts >       “I use both programs.”
 
RTM is a visual part of the calendar seen as a sidebar portion on the screen. Liz’s book gives names or books to read on how to use both.
 
66%     Social Skills Menu – From time to time, my daughter’s special education staff hands me papers with bits of useful information. The Speech and Language therapists referred to this material as…Basic Social Skills…
 
< My Thoughts and my version of the list includes the following…for the complete list, please refer to Liz’s book.>
 
66%     Partial List of Things to deal with on the Social Skills Menu –
  • Interests vs. boredom
  • Odd mannerisms  (such as stimming behavior)
  • Anger and frustration, especially with inability to communicate effectively
  • Identifying triggers to your anger
  • Talking vs. acting out feelings in a negative way
  • Anxiety, fear – understanding alarm reactions in the environment
  • Unpleasant, intrusive thoughts
  • Compulsive behaviors
  • Feared social situations
  • Politely interrupting
  • Beginning & ending conversations – also what to avoid talking about
  • How to make and share friends
  • Deal with teasing and bullying
  • Accepting waiting for what you want – difference between want and need
  • Stressful situations
  • Recognizing and asking for help when needed
 
82%     Can Autism be Cured? Every so often, I read about some herbal preparation, nutritional supplement, or alternative therapy that is supposed to cure autism…
 
< My Thoughts >      “Can Autism be Cured?” “Every so often, I read about some herbal preparation, nutritional supplement, or alternative therapy that is supposed to cure autism.” 
 
Retrieved from: http://childdevelopmentinfo.com/child-psychology/autism-aspergers/

Advice to parents – “An ideal treatment coordinates therapies to address the core disorders the child is experiencing. An effective treatment program builds on the child’s interests and engages the child. More reliable than miracle cures, which appear in magazines, parents should seek out the thoroughly researched and well-documented data derived from carefully controlled clinical research.”
 
Editor (2017) tells us that the nation’s largest autism advocacy organization (Autism Speaks) no longer includes ‘finding a cure for autism’ in their mission statement. They say that “the organization grew to believe that autism is something to be worked with, for promoting fulfilling and productive lives of people on the spectrum – rather than something that has to be done to.” Also missing are the words ‘struggle’, ‘hardship’, and ‘crisis’ from their mission statement.
 
From: https://www.autismspeaks.org/about-us/mission the Autism Speaks website, says that they are enhancing lives and accelerating a spectrum of solutions for tomorrow. That they remain committed to greater discovery, and better treatments for co-existing conditions such as GI issues, sleep disorder, seizures, and anxiety.
 
I wanted to add here that there are places for parents to get new information, other than the “Autism Websites.” For instance, check out other websites that provide current news…
  • American Academy of Pediatrics (AAP)
  • Web MD
  • National Institute of Mental Health
  • Psychological & Psychiatric Publications
  • Scientific & Pharmaceutical Journals
You may want to check your state and local websites. Also, many countries have a different ‘take’ on autism. Check their publications and journals too. If you have access to any college libraries, brick and mortar or online, those are powerful resources for information, too.
 
83%     So, my brain went chugging along, and came up with an idea: what if there are two very different causes for Spectrum behavior?
 
One would be the genetic brain wiring issue that is inherited and has been a human variant for millennia.
 
This type is not affected by any alternative therapies, can’t be cured, and can be passed down to our kids.
 
The other would be non-genetic, but caused instead by some external factor. The symptoms are caused by that external factor, and may be reversible with the right therapy or permanent. …not genetic and won’t be passed to one’s children.
 
Because the symptom list is so similar, we tend to not notice that there are two very different underlying conditions here…
 
< My Thoughts >      “there are two very different underlying conditions here…”
 
Some scientists believe that a combination of both genetic changes and environmental insults are to blame for autism. 
 
Elder (2015) believes that autism is a neurological condition rather than a disease to be ‘cured’ and that the emphasis should be on helping these persons achieve a better quality of life. Including, coping with anxiety and sensory overload.
 
 91%    <From the blog> “For me, it’s time for our society as a whole to stop fighting about labels. Instead, simply focus on providing each person access to whatever help they need to function and grow. This typically involves trial & error until the right combination of services is found for each individual.”
 
Right now, services are inaccessible to huge portions of society because of these artificial divisions of what truly is a spectrum of behaviors and thinking-styles…
 
97%     I do not consider my AS as a disability any more than my height is. I have learned to deal in a non-Asperger’s’ world, and believe many others can learn as well.
 
< My Thoughts >      “I do not consider my AS as a disability…”
 
Editor (2016) discussing What Really Causes Autism, explains that author Simon Makin says many on the spectrum say “Don’t Cure My Autism”. He believes that instead, autistic people want to have better accommodations, better acceptance, and improved diagnosis.
 
Amen!
 
98%     I live in a house in the New England woods with two mostly grown children and a cat who hasn’t chosen us yet.
 
End of excerpts from Liz’s book.
 
< My Thoughts >      Liz recently shares that she is still writing… and still Aspie.  She says that her ‘kid’ with NLD is a fully-independent adult, working and earning a good income. 
 
The book…The Aspie Parent is a must read for all persons interested in the Autism Spectrum. So many links and references to other topical material you will need…and some that you didn’t know that you would need!  Smiles.
 
===============
 
REFERENCES used in < My Thoughts > are:
 
Editor (2016). Don’t Cure My Autism, by Simon Makin; Scientific American Mind; Vol.27:2.
 
Editor (2017). Autism Speaks Drops ‘Cure’ from Mission Statement; The ASHA Leader; Vol22:11.
 
Elder, J. (2015). Fixing Autism Research; MIY Technology Review Vol.118:1; p.10-11.
 
Greene, R.W. (2016). Raising Human Beings: Creating a Collaborative Partnership with Your Child; Simon & Schuster & eBook.
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LINK to see book on Amazon.com
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    Sara Luker is the author of this BLOG.

    My purposes are 'educational' in nature.  My hope is that this is a place for 'First Responders' and the 'Battle Worn' alike to find information, take solace, and to help one another, in the name of Autism.  My commitment is to deliver hope, insight, and a realm of possibilities to all who enter this site. 

    ​Disclaimer: Just to let you know that I, Sara Luker, have put forth my best efforts to create the extended book reviews presented here on this website. I have permission from the authors to publish these Extended Book Reviews. This is just a sharing of stories of those who have gone on before you. Please, understand also that all health matters ALWAYS require professional medical decisions, diagnosis, and treatment by highly qualified and licensed individuals.
     
    Recently, I have added “What to Do While You Wait” to the website. This collection of information is for educational purposes only. My hope is that you will not feel alone when dealing with the mysteries of Autism Spectrum Disorder. Know that I, Sara Luker, receive neither financial rewards nor other interests derived from this website. This has been created purely for the readers sharing information and for your enjoyment. 

    Regards,
    Sara Luker
    ========

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