I googled for thousands of hours to uncover these gems, I hope they help you as much as they helped us! I wrote this article as a catchall to share with friends or friends of friends that are looking for our story of our success. I dare to call it success because at age 8, Brady is doing GREAT. He understands himself, he advocates for himself (sometimes), he is making friends and treating them like friends, instead of like interchangeable people that share a common interest. This is a very exciting year for us, because it is a validation of parenting off the map. There really isn’t a parenting map, but there is the illusion of the map. When Brady wasn’t keeping up with his peers, it was a scary time for us–and every horrible thing we read or heard sounded possible. It’s not scary anymore.
We began our autism journey when my son was a toddler and a teacher friend suggested he was autistic. I was distressed and in denial. I was afraid of the word Autism and what it meant.
If you know one child with autism, you know one child with autism. Brady started talking at a normal age, he hit many of his developmental milestones. He had an amazing memory. He had a large vocabulary. He loved ball drops, marble runs, rainbows, numbers, music, water and the phases of the moon. He had constant meltdowns, transition issues, sensory issues and was oblivious or overwhelmed by people. He did not play with other children and he used me as a buffer for almost every social experience.
I learned that there is more than one perspective. I chose to follow the perspective of autistic adults. They say “No about us, without us.”
Autism Awareness is a perspective aired by groups like Autism Speaks. These were the first voices I heard when I researched autism or sought services. They have a ton of information and material online, so this paper will focus on Autism Acceptance voices, wherein we have taken the most advice.
Autism Acceptance is the idea that Autism is a pervasive part of your person, it is the way you are wired. It can’t be turned off, medicated away and should not be regarded as an illness. You could say “different not less.” Sometimes you might think “it is going away” or “s/he is growing out of it” this is not accurate. Autism is part of your identity. Another word for this is Autism Positivity.
11 concepts Key Concepts for Parenting our child on the spectrum
2. Take advice from adults on the autism spectrum. Adults like Karla Fisher (Karla’s ASD page—invaluable, I follow her on Facebook), William Stillman (author of The Everything Asperger’s Book), John Elder Robison.
3. Read the The Autism Discussion Page run by Bill Nason. He is compassionate and clear. I share his writing with my son’s teacher.
4. Learn the Token Management Theory. It is easier than it sounds. It does not require real tokens or charts. This helps us prevent meltdowns. This really should be number 1 as everything seemed to cascade from this.
5. Introduce your child to Autistic Role Models. This was hard at first, we had to find people online or read children’s books. I told Brady he was autistic when he was 7 and in 2nd grade (this is when he asked about it). This is a good article about explaining autism to a child. “On Being a Hair Dryer Kid in a Toaster Brained World” by Mom Not Otherwise Specified. We watched YouTube videos by Jacob Barnett (he’s a genius so we can’t totally relate but he’s charming and practices great self-acceptance, on autism he says “I just roll with it”)
6. We read stories about Joey Hudy and we practiced science experiments from Dr. Mad Science, a boy on the spectrum who loves science too. In 2nd Grade Brady led some science experiments in class acting like Dr. Brady and he decorated his bedroom to look like Jacob Barnett’s bedroom and wore a hoodie and a baseball cap backwards like Jacob for a while.
7. Remember that “All progress occurs through area of interest”. Brady had strong interests that I used to draw him out. This is also called “Affinity Theory” and Ron Suskind has an interesting book about how his son was able to make connection using his passion for Disney.
- Practice Bill Nason’s article “Stretching Comfort Zones” we have a long summer vacation on the East Coast staying at my mom’s house. I constantly challenge Brady’s comfort level. It helps that I’m a little disorganized and thus he’s never been able to count on me to be prompt and predictable the way he longs for me to be. It also helps that Brady read the article and is on board with the plan. Now that he is older he reads things too.
9. Cognitive Therapy is recommended for kids on the spectrum. The kind we use is based on the work of Dr. Abraham A Low in his book, Mental Health Through Will Training. These techniques are a foundation of our parenting both of our children. I added a list of “spots” to the end of this passage. You train yourself to recognize when you are losing your temper and practice a spot to get your temper under control. You can click on spots here too and cycle through them. Practicing self-leadership is our way of helping Brady become aware of his temper as a manageable symptom and his perspective as partial. This was key to helping him recognize the viewpoints of other people. Because Brady is skilled at practicing self-leadership he’s made great strides socially.
10. Learn about how play develops; learn about instrument play v. relationship building play—I remember reading about his in a child development textbook. Learn about pragmatics and expressive language. If you understand the mechanics of play, social expression and these child development milestones that most kids acquire intuitively you will be able to articulate what you are trying to teach your child. If your child does not learn from watching other people (social blindness) then you have to find another way to make that connection. Brady had huge delays in these areas but I did not even know the words for it to understand why he could not do certain things. He had clear and beautiful speech, yet speech therapy is essential for him.
11. The idea of narrative psychology. Read: “This is Your Life And How We Tell it” We use this idea to build a positive story to help him grow confidence. This is not the same as a social story, it is a narrative. It helps me offset undermining remarks about autism. For example: ”Autistic Children don’t like PE.” No doubt this is true—but that attitude can turn the child off from activities altogether. An ongoing positive narrative within the home that supports the idea that he loves and excels at sports. Sometimes I think of the famous Theodore Roosevelt quote about “the Man in the Arena” Autism has such a strong stigma about what you do/are/like/can be, that I need to fight that in the home. My son already is hampered by rigidity, anxiety, fear of novelty, transition and new people. Why add to it with dire predictions?
It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat. –Theodore Roosevelt (THE MAN IN THE ARENA Excerpt from the speech “Citizenship In A Republic” delivered at the Sorbonne, in Paris, France on 23 April, 1910download PDF of complete speech )
What it was like for my in kindergartenby Brady K. My son wrote this post with help when he was in 2nd grade. He attends a charter school and is mainstreamed. Today he has many friends and loves school.
my Listmania list of my favorite Autism Books (fiction/nonfiction/YA and adult).
Cognitive Therapy: The following is a list of Cognitive Therapy Prompts we use to manage fear and anger in our house—these are excerpted from Mental Health Through Will Training. We say this stuff like a broken record in our house, because nervous and angry temper ebbs and flows with the day. I realize it is a long and cumbersome list, but it was incredibly useful for us. I include this because many people I know asked me to forward the list when they hear me talking/explaining temper to my children. In a moment when he has temper or is worked up, these are pithy statements that I can use to move us passed an intractable moment. With practice it comes to the tip of the tongue and helps control temper. The easiest book to try the method out can be downloaded on your kindle for .99.
- “I cannot” means “I care not”.
- All I know is that I don’t know.
- Angry temper is temper turned outward toward another.
- Anticipation of an event is usually worse than the realization of that event.
- Approval of others is a want, not a need.
- Avoid self-importance. Others don’t sit around and think about what I did or said.
- Be group minded.
- Be self-led, not symptom-led.
- Calm begets calm, temper begets temper.
- Change your thoughts and impulses and your feeling and sensations will follow suit.
- Choose peace over power. Don’t go for the “symbolic victory”! (See, I told you so.)
- Choose to hope rather than “gloom, doom and despair.”
- Comfort is a want, not a need.
- Comparison temper is a form of fear temper. (comparing yourself to others)
- Decide, plan and act.
- Discomfort can be patiently borne, bravely faced and humbly tolerated. (we use this one all the time, “tolerate the discomfort”, we never say “it’s ok” we say “bear it”)
- Don’t blame, complain or explain.
- Don’t give outer expression to my inner environment when temper is involved.
- Don’t let the trivialities of everyday life work me up.
- Don’t take your own dear selves too seriously.
- Drop the danger, diagnosing and judgment.
- Drop the excessive need to control outer environment. (Outer environment is outside of us, inner environment is our feelings)
- Drop the judgment on others and myself.
- Drop the need to be exceptional.
- Drop the use of temperamental lingo. (this means working yourself up and saying things like, I’m going to die, or it was the worst thing, etc.)
- Drop the vanity of always knowing better and best.
- ENDORSE for the effort, not the outcome.
- Endorse like an ever flowing river…
- Every measure of self-control brings a measure of self-respect.
- Every day is full of frustration and disappointment. That’s average.
- Everyone is entitled to their initial flare, (reaction).
- Excuse yourself and others, don’t accuse.
- Failure to practice spotting is Sabotage and so is failure to practice muscle control.
- Fear is a belief and beliefs can be changed.
- Fearful temper is temper turned inward, toward ourselves: self-disgust, embarrassment…
- Feelings are NOT facts.
- Feelings call for expression, temper for suppression.
- Feelings rise and feelings fall.
- Feelings should be expressed and temper suppressed.
- Focus on what you Can do, Do have and Do know, not the opposite.
- Get out of duality. A firm decision will steady you.
- Go about my mental health with a strong aim, not a lose wish.
- Have I endorsed today?
- Have the courage to be wrong in the trivialities of everyday life.
- Have the courage to make a mistake.
- Have the will to “humility”.
- Helplessness is not hopelessness. There is no hopeless case.
- Humor is our best friend, temper our worst enemy.
- I can act my way into right thinking. (Action produces motivation.)
- I can always share my feelings with an understanding party, without using “temperamental lingo”.
- I can bear discomfort and do hard things.
- I can command my muscles to move.
- I can control my speech muscles.
- I can do the things I fear and hate to do.
- I can do things in part acts, (baby steps) and then endorse for each act.
- I can feel guilty without being guilty.
- I can move my muscles as needed. Then endorse.
- I cannot control outer environment, only my inner environment.
- I don’t need to be a saint, hero or angel.
- I have choices. (agency)
- If you can’t change an event, change your attitude towards it.
- Interpret securely, don’t exaggerate insecurely.
- It’s okay to be average.
- Lower your expectations and your performance will rise.
- Mistakes are a healthy and valuable part of life.
- Most symptoms are NOT dangerous, only distressing.
- Nervous people have a passion for self-distrust.
- NEVER INDICT, ONLY ENDORSE!
- Objectivity terminates panic.
- Our feelings and thoughts can lie to us.
- Our self-worth does not depend on our performance.
- Outer environment can be rude, crude and indifferent.
- Peace from outer environment is temporary and isn’t really peace.
- People do things that annoy us, not to annoy us.
- Refuse to sacrifice inner peace for trivialities.
- Reject bad thoughts!
- Remember, peace over power.
- Remove the danger from a situation.
- Replace an insecure thought with a secure thought.
- Resist impulses that are not good for your mental health.
- Secure your racing thoughts.
- Some things happen by chance and not by choice.
- Spot and see if your “imagination is on fire.”
- Stop, Drop (the danger) and Spot
- Take a “ho-hum” attitude toward a distressing task or symptoms.
- Take the total view of a situation, not just the partial view.
- Temper blocks logic.
- Temper is a luxury I can’t afford.
- Temper is the intellectual blindness to the other side of the story.
- There is no right or wrong in trivial matters.
- Thoughts produce symptoms & thoughts let them go.
- To be simple is to be great.
- Treat your mental health like a business, not a game.
- Trust in your own validity.
- Unrealistic expectations bring disappointment.
- We feel better in proportion to the amount of discomfort we are willing to bear.
- We want to be exceptional, but fear we aren’t even average.
- Wear the mask. (behave in a socially agreeable way)
- When we express ourselves in temper we end up with self-disgust.
If you like to read or follow blogs, this is a list of Autism Positivity blogs representing many different voices (click CTRL+Click to follow the link or move your mouse over the link to see the URL in a tooltip). I copied and pasted the blogroll from this page, Life his Way):
- An interview with Karla, Dr. Arnold and me
- Our “less is more” IEP story
- It’s Not Hate: on advocacy
- Thinking Person’s Guide to Autism
- An autistified habitat!
- A hair-dryer kid in a toaster-brained world
- Mama Be Good
- Autism and Empathy
- The Third Glance: A peek into my (Autistic) mind
- Just Stimming…
- Tiny Grace Notes (AKA Ask an Autistic)
- Emma’s Hope Book
- Autistic Hoya
- Why “autistic person” and not “person with autism”?
- Another post on person-first vs. disability-first
- Wrong Planet
- On writing about autism science
- New Leaves Clinic: neurodiversity support in Beaverton, OR