Eleanor Roosevelt and the Jews (Part 6)

The beginning of this messy journey begins here.  

What I've been doing with these posts is searching for mention of Jews, Israel, and some related words in Eleanor Roosevelt's My Day column.

In this post, I'll be looking at what she wrote in 1954.

My searching has given me 17 results.  I'm going to subtract the ones where Roosevelt mentions the searched for words just in passing....UNLESS she talks about something else in the column that is particularly interesting to me.

* * *

Okay. I went through the 17.

I'm now left with 12.

* * *

Starting with January 8, 1954.

Roosevelt writes:

The Jewish people have been among the earliest settlers in our country. On October 12, 1492, Luis de Torres was the first Jew to land from Columbus' caravel Santa Maria and he gave thanks to God for having safely crossed the uncharted seas.

Yes. Jews participated in colonization.

I wonder how bad Luis de Torres was in terms of that.

Roosevelt also talks about the first Jewish cemetery in the United States.  It was consecrated in the year 1656.

* * *

Lord Wiki says that Luis de Torres was Columbus's interpreter.  He knew Hebrew, Chaldaic, and Arabic.

Uh...weren't they looking for India?

Maybe they were planning to go to Arabic countries as well.

Who was speaking Hebrew at the time?  

I have no idea what Chaldaic is.

I shouldn't judge these guys, because the world was much less explored in those days.  They might have had no idea about who was speaking which languages were.  

Or I might be wrong, and these guys were ignorant and didn't know how to use the research sources that were available back then.

* * *

Lord Wiki says de Torres was a converso.  I was thinking that had something to do with conversations...relating to him being a interpreter.  But it turns out that it means he converted to Catholicism.  

SO...if it ends up he was an extra violent, greedy, or cruel colonizer, I'll let the Catholics claim him.

If he ends up being less awful than the typical colonizer, I'll let us Jews claim him.

I'm joking.....

* * *

Lord Wiki says de Torres was killed in 1493, so he didn't spend a lot of time in the Americas.

* * *

I've now happened on an interesting website called The Internet Index of Tough Jews.

I'm wondering if the site is right-winged or more center.

Is it prejudiced that I can't imagine it being left-wing?

I feel left-wing people would appreciate toughness, but I feel we'd be more likely to honor things like compassion and intelligence.  

Anyway....

This website says that de Torres converted to Catholicism because of the Inquisition.  So it wasn't exactly a choice.

I'm not sure how much he needed to be coerced.  Was it like screaming No!!!!! Don't cut off my head!  I'll convert! Or was it more like Oh. Okay. Sure. Why not?  

Here, they give de Torres more languages for his resume—Aramaic (Fallen!) Spanish, Portuguese, French, and Latin.

They don't mention the Chaldaic thing.

Oh!!

Columbus thought he was going to find Asian descendants of the last tribes of Israel on his journeys.  That's why he wanted someone who could speak Aramaic and Hebrew.

So, there was some thought put into the languages.  It might not have been correct.  But it wasn't random or completely ignorant.

When they reached Cuba, Columbus sent de Torres and some others to find people.

There are conflicting stories about what happened to de Torres.  Some people gives him a long-lived happy ending and others have him being killed.  

The website says that in a Simon Weisenthnal book, Weisenthnal speculates that the first words spoken to the Native Americans were probably Hebrew.

Maybe?

I guess that's possible if they really saw finding-the-Asian-descendants-of-the-last-tribes a sure thing. 

I imagined it was more of a maybe-kind-of-thing.  

If one has no idea what language a group of people speak, what do they start with?

For those of us not bilingual, we'd probably just use our own language and hope for the best.

Would it be the same for an interpreter?

Maybe de Torres should have worked on some Indian languages. Like Hindi? I mean he did have that long ship ride.

Or maybe there were no books on Indian languages.

Maybe Chaldaic is an Indian language?

No...

Googled. It's a Semitic language.  Or it's connected to a Semitic group of people.  They were from what is now Southern Iraq.

It's confusing.

* * *

I'm thinking maybe I'm stupid and Columbus wasn't trying to go to India but some other place around there.

Googled.

I'm not going to read too much.  But I think he was trying to get to Asia in general.  And that might have included what we now call the Middle East.

I'm probably applying too much of our modern globe to 1492.

* * *

I was going to look up the first Jewish cemetery.  But I've already spent more time on the January 8 column than I wanted to.

I think I shall move onto the next column.  

* * *

I'm confused about whether I should use the term "Column" for the individual entries.

A few times, I've written "post" or "entry" but then I tell myself that Roosevelt wasn't a blogger, and I delete it.  

* * *

Before I move on, actually...

We had flags in our front yard—three small Pride flags and an American flag we took from the Lake House.

A few weeks ago, the American flag disappeared.

Of course, we thought it was some kind of political attack.  

We watched the Ring videos, but it didn't show the thief.  

Tim questioned why they took the American flag and not the Pride ones.

I said they probably didn't like people like us having an American flag.

Then....

Yesterday, I suddenly noticed the three Pride flags were missing.

Again, I watched the Ring video.  I didn't see a thief.  But I could pinpoint the general time, the flags disappeared.

Tim couldn't figure out how the thief circumvented the camera.  He suggested it might be an animal.  Though I'm not sure he actually believed that.  I vetoed that theory. I could imagine an animal accidentally taking one flag.  But all three?

I ordered more flags from Amazon...a whole bunch.  It was kind of about being patriotic and supportive of LGBTQ+.  But I think I mostly bought them as bait.  

Tim had plans to put out a second camera.

Then I guess he decided to watch the footage from yesterday again. He has access to something where the camera takes a photo every...thirty seconds? Three minutes?  I forget.

He called me over.

It HAD been an animal. A squirrel!!!

We didn't get good footage of the actual thievery.  It's too far away and blurry. But we saw enough to conclude the squirrel did it.

I Googled and found a story of a veteran who thought people were stealing his flag.  It ended up being a squirrel taking the parts of the flag to use for his nest.

Anyway...I have lots of flags.  So I'll keep providing the squirrel with new material.  

* * *

Moving onto January 19, 1954.

I was confused here.  

Roosevelt says:

Sunday a very unique party was given in New York City in honor of Dr. Israel Goldstein. This party was an informal reception for the many "little people" whose troubles and difficulties have been heard by members of the Jewish Conciliation Board of America, Inc., of which Dr. Goldstein is the president. He is also the president of the American Jewish Congress and a distinguished rabbi.

When I first saw this, I quickly imagined she was talking about dwarfs.  I told myself I was wrong. But then I started having doubts.  

Maybe the word "unique" made me question things.

* * *

Well, I just Googled Israel Goldstein.  He wasn't a dwarf.

So I think little people here probably means not-famous.

It would the 1950's version of not-blue-checked.

* * *

Now I'm having more (different) confusion about the party.

Roosevelt says:

Here I want to report to you only on this particular party. Supreme Court Justice William O. Douglas was the principal speaker and the place of meeting was the old Educational Alliance Building on New York's Lower East Side. This is one of our oldest and best known settlement houses. Many of the little people gathered there were survivors of Hitler's concentration camps, others were products of New York's tenements. There were also present, however, judges and lawyers and business leaders who sat on the panels to hear the cases and to settle the disputes for these little people to the satisfaction of both the plaintiff and defendant.

I'm guessing the party was for the people who once had their disputes handled there.  The Little People.  But it almost sounds like they dealt with disputes at the party.

I'm kind of impressed that they got all these disputing people to come and celebrate together.

I mean even if a dispute is settled, I don't think it automatically restores peace between people. I also imagine the losing side would often be resentful.

I'm wondering if most of the people attending the party were the winners in their disputes.

* * *

The Jewish Telegraphic Agency has a 1959 article about the Jewish Conciliation Board. 

The article says, Dr. Goldstein pointed out in his speech that many of the cases dealt by the Board “involved Jewish patterns, traditions and mores which only a Jewish tribunal could understand sympathetically.

And....

Under the arbitration laws of New York State we have been able to render binding decisions, “Dr. Goldstein reported. “We have probably saved our city and state millions of dollars in court costs and eased the already overcrowded court calendars.

That makes sense.

Though I still imagine people being disgruntled about the decisions.  

* * *

In her January 29 column, Roosevelt writes about the one hundredth anniversary of the Jewish Community Center Movement.

I knew there were Jewish Community Centers, but I didn't realize there was a movement regarding them.

A Senator named Herbert Lehman talked about the the Centers and the movement in Congress.  At that time, there were 350 centers and more than a half million members.

This makes me feel guilty that we don't belong to a Jewish Community Center.

The last time we had any involvement is when we accompanied my sister and her family to a Jewish Community Center pool.  I have no idea what year that was.

Lehman said to Congress that the centers are a vigorous force for democracy. A center gives the American Jew those enriching experiences which help make him a better Jew and a better citizen and therefore a happier and more interesting person. 

I can imagine that's true for some Jews.  But I think the same can be said for libraries, fandom conventions, movie theaters, college campuses, dog parks, theme parks, haunted houses, museums, botanical gardens, zoos, sporting events, virtual online spaces....

Well, maybe not the Jewish part but it would work for the happier-and-more-interesting person part.

* * *

The Jewish Community Movement has a website.  They now call themselves the JCC Association of North America.

I'm very glad to see that the JCC leans left.

They have a whole page for a statement on racial equality and also one for their support of Asian and Pacific Islanders.

On racism they say:  We are inspired by voices calling upon us to come together to root out racism and inequality while those who would incite and divide us, sow discord and disharmony that place our progress as a nation at risk.

That's a very polite and pointed way of saying We're not MAGA.  

They have the longer version of the beautiful, important Eli Wiesel quote: 

I swore never to be silent whenever wherever human beings endure suffering and humiliation. We must take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Sometimes we must interfere. When human lives are endangered, when human dignity is in jeopardy, national borders and sensitivities become irrelevant. Wherever men and women are persecuted because of their race, religion, or political views, that place must—at that moment—become the center of the universe.

I wish there was a gun that would shoot quotes instead of bullets.

I would shoot Eli Wiesel's quote to anyone who 

A) tells a corporation or company to stay out of politics

B) tells a celebrity that they should stay out of politics

C) Treats politics like team sports rather than decision-making that will have huge consequences for people lacking in privilege.  

* * *

I just remembered/realized that both my nieces attended and worked/work at a Jewish Community Center camp.  And now one of them is getting a degree in education.  

Interestingly, the Jewish day camp that my older sister and I went to in Madison Wisconsin isn't listed as a JCC camp.  I guess some Jewish camps are outside the system?

And the Cystic Fibrosis camp where Tim and I first met was held at a Jewish camp.  That's not part of the JCC either.

Well...now I'm looking at the website of Camp Blue Ridge, and I'm not seeing anything about it being a Jewish camp.

Maybe it's not Jewish anymore?

* * *

I Googled and ended up on the Jewish Federation Website. 

About Camp Blue Ridge, they say: While the camp is officially non-affiliated, the majority of the clientele come from an American Jewish background.

Interesting.

I wonder if it was affiliated in the 1980's and 1990's?

Also...I'm thinking maybe some Jewish camps are affiliated with the Jewish Community Center and others are affiliated with the Jewish Federation.  And I guess some are unofficially affiliated.

* * *

Googled my old day camp.  Camp Shalom.

It's affiliated with the Jewish Federation.  

I'm wondering what's the relationship between the Federation and JCC?  Are the two organizations friends?  Frenemies?

* * *

Later in the January 29 column, Roosevelt talks about her visit to Canada.  She had dinner with the Consul General of Israel whose husband became the Minister of Israel from Canada.

She mentions their last name (Camay) but not their firsts.

I did some Googling and was unable to find about more about Mr. and Mrs. Camay.

And....One of the few sites listed was Roosevelt's column.

* * *

Sadly, I wrote two of the days out of order.

I don't really want to jump back in time, so I'm going to skip talking about what Roosevelt wrote on January 27.

* * *

Jumping ahead to February 12. 

Roosevelt writes about a movement in Chicago to get people to buy Israeli Bonds.

Some things that Roosevelt says about Israel for this day:

So far the interest in these bonds has always been met promptly and I think that anyone who has been in Israel will come away, as I did, with the feeling that the spirit of the people there is one that promises success for the establishment of a stable country.

And...

There is much to be done and many problems to be met in Israel but in that area of the world, Israel is the one country which seems to be embarked on creating a truly democratic form of government. If peace can be really established between the Arab nations and Israel, I think Israel can serve as a valuable spark plug for democracy as well as for economic improvement in the lives of the people of the whole area.

I feel that's somewhat ethnocentric. I'm not sure.

As much as Jews were "other" in the United States, I think back then that Arabs/Muslims were much more so.  

And while some of the Jews in Israel were Middle Eastern, there were others coming from Europe.  And Americans in the 1950's probably had a stronger comfort level with people originating from Europe.  

On the other hand, I am lacking when it comes to the history of the Middle East.  It could be that the countries there were very much lacking in democracy.

And economic progress.

Progress is a hard one for me.

I wish every person had access to progress whether it be about values or technology.

At the same time, I want every individual to have the freedom not to participate in modern values and modern technology.  BUT.... I don't want those people imposing their restrictions on others...including their spouses or children.

Well...all children are going to be at least somewhat restricted by their parent's decisions and way of life.  I think it's only problematic when there are too many restrictions and/or the child, as they approach adulthood, is forced or manipulated into remaining a part of a very restrictive situation 

* * *

Thinking more about it.

It's like I feel it's wrong to judge other cultures and countries for being less modern.

But then at the same time, less modern often equals less civil rights.

And thinking about it....

I would very much prefer that people around the world judge my state (Texas) harshly.

So...if most countries in the 1950's Middle East were like Texas in terms of how the laws treat women and other marginalized people, and Israel showed promise of turning the whole area into less Texas and more California or New York.....

Then I'm 100% on board with what Roosevelt was saying regarding the Middle East.

* * *

Onto March 11....

Roosevelt writes about getting a pathetic letter from an Israeli mother.  I was sort of expecting some shaming from Roosevelt.  But pathetic has changed meanings through the years.

These days, it's usually used as an insult.  But I think in the past, it was more a word of compassion.

Anyway, what happened is the mother's daughter had been heading to Iran to visit her husband. He had been working there.  

The plane had to make an emergency landing in Iraq. The police detained the daughter, because she had an Israeli passport.  Then they put her in prison.

I really am lost when it comes to Middle Eastern politics.  

I'm surprised it was deemed safe for her to go to Iran.  Did Iran have better relations with Israel than Iraq back then?

The daughter was thirty-one when this happened. About a decade earlier, she had spent four years in a Nazi concentration camp.

I wonder what happened to her.

Did she get out?

Did she survive?

Roosevelt provides the name of the daughter—Minni Bar-Ness.  I Googled and didn't find anything.

* * *

I Googled more—using different search terms.  I still can't find anything.

I feel it should be out there somewhere.

Roosevelt says the mother wrote: Since then six weeks have passed and all efforts on the part of the Israeli, Dutch, English and other authorities were ineffectual and fruitless. The whole world is informed about the matter and calls it a 'kidnapping.'

If the whole world knew about it, I feel someone should have written about it somewhere.

Maybe it was written about but never archived...at least not where it's easy to find on the Internet.

I could also be Googling the wrong things.

Two disturbing theories cross my mind.

A) That it never happened and the woman was seeking attention from Roosevelt.  It's not like, in those days, Roosevelt could go on Twitter to see for herself what the world was saying.

B) These types of kidnappings/imprisonments were so commonplace that they weren't seen as newsworthy.

* * *

The better scenario is that I'm Googling wrong.

The best solution is someone points me in the right direction, and I learn the Israeli woman was released from Iraqi prison and lived a long life.

I want to say happily ever after but after a Nazi death camp and then being imprisoned for having the "wrong" passport, I'm sure she'd too traumatized to be a very happy person.

* * *

I just tried again.

I'm unable to let this go.

I Googled Minni Bar-Ness and Tel Aviv.  I ended up seeing another My Day column one that I hadn't saved.  I guess it doesn't mention Israel or Jewish specifically.  But I'll add it now.

From what I can see in the little search blurb, Minni Bar-Ness ended up coming home.  I'll read the other details when I get to June 5.

For now, I'm heading over to March 26. 

Roosevelt writes about Catholics, Protestants, and Jewish groups making a joint effort to raise money for distressed people overseas.

She writes: It is a heartening thing when the three great religions in the United States come together and make a joint appeal for the support of their widespread relief and reconstruction efforts in areas of distress overseas.

I imagine/hope that these days, Muslims and other religions would be included in the team work.

I imagine American Muslims were not included (or not mentioned) in the 1954 endeavor, because they were marginalized.  I doubt it was because they were less giving and compassionate.  

I'm wondering what the US population of Muslims was compared to the US population of Jews.  

* * *

I'm not easily finding population statistics about Muslims in the 1950's.

I think I'm going to give up.

My Google adventures are not going so well today.

* * *

May 19.

Roosevelt writes about a booklet that talks about her husband's meeting with King Ibn Saud.  It was published by a group called American Friends of the Middle East, Inc.

I think I read about this meeting.  It was where the King was not very on board with the whole Israel plan.  

* * *

I searched my blog.

It was in part 2 of my Eleanor Roosevelt series.  

I'm not sure when the meeting between FDR and King IBN Saud took place, but she wrote about the meeting in October 1945...which was six months after FDR had died.

FDR hadn't been pleased with the talks.

Roosevelt defends...explains...what she had meant in the May 22 column.

My husband came back full of interest in the whole meeting and with great admiration for King Ibn Saud. But Colonel Eddy says in one place that he was surprised to hear that my husband said he was disappointed in his interview. I think I can clear that point up.

It was not the meeting nor the personal feeling he had for the King that was a disappointment. It was something else, which I heard him speak of several times. He had hoped that from this meeting there could come an understanding with the King which would make for a pleasanter atmosphere surrounding the small, new state of Israel.

Well, yeah.

In her 1945 column, it's not like she said that her husband came home and talked about how the king was creepy, annoying, rude, etc.  

I think it was clear that he was disappointed with the talks and not the king himself.

Though if a meeting doesn't result in what we're were hoping for, it wouldn't be surprising if we hold some negative feelings towards the person who brought on the disappointing results.

Roosevelt writes: 

My husband felt that there was so much land in that area, and that the promise of a homeland had been made to the Jews who settled in Israel. He hoped that by peaceful means a settlement could be arranged which would not create bad feeling between peoples that had lived side by side in harmony. He was disappointed that, just as Colonel Eddy reports, King Ibn Saud made no concessions as regards Israel.

I feel in this particular column, Roosevelt is playing the game of diplomacy. Maybe kind of awkwardly.

 

* * *

In her May 22 column, Roosevelt talks about opposition to the United Nations.  

She talks about a pamphlet she received titled  "Giving Away Our Liberties to the Super Government of the U.N."

The pamphlet says: Apart from these dangerous aspects of our membership in the anti-Christian U.N. these are serious reasons why we must unite in prayer to try to get the U.S. out of the U.N. Some of the most-important reasons are the deadly 'genocide treaty,' the 'Covenant of Human Rights,' the 'UNESCO,' together with other demands of the U.N. that we abandon our immigration laws, our tariffs and our foreign policies.

I think there are Americans today who are against the UN.  I think usually right-wing ones.

In response to the "deadly genocide treaty", Roosevelt writes:

The genocide treaty is not deadly. It was written to unite all people of all nations against the mass extermination of a whole people in the way Hitler tried to exterminate the Jews in Germany and later the Poles in Poland.

What kind of person would be against a genocide treaty?

Did they imagine it was a pro-genocide treaty?

Roosevelt says the pamphlet was written by a group called the Cinema Education Guide.  I wonder if they're still around or if there's anything out there written about them.  

* * *

Googled.

I can't find anything.

They might have been super fringe.

* * *

Now I'm back to the story of Minni Bar-Ness.

I thought I had initially missed the June 5 column, because it doesn't mention "Jewish" or "Israel".  But Roosevelt does mention the United Jewish Appeal.  So, I think for some reason, I had wrongly concluded that it didn't have anything substantial.

OR I might have clicked on it/closed it accidentally?

Anyway...Roosevelt writes that she received a letter from Minni Bar-Ness. Apparently, Bar-Ness had been released from the Iraqi prison and reunited with her husband and son.  

I was thinking that her story need not have been very commonplace in order to be not newsworthy.  

These days, it seems very easy to become newsworthy. We have so many news outlets.  And most every news outlet can be accessed via Google.

If something newsworthy happens to me in Carrollton Texas and someone from my past decides to Google me, they'll be able to probably find mention of it.

In the 1950's, there was finite space for news.  There was more chance for things to fall under the radar.

All that being said, I'm still suspicious and can very much imagine a person writing to Eleanor Roosevelt with a fake story.

* * *

If anyone out there knows of this Minni Bar-Ness....please tell me!

She must have descendants out there somewhere.

Though...I say this and then think, What if someone out there decides to pile on to the making-stuff-up.

* * *

Roosevelt mentions neither Jews nor Israel in her July 20 column.  She mentions Palestine.

A group called The Christian Rural Overseas Program sent surplus food items to various groups in needs; one being displaced Arabs from Palestine.  This included butter, cheese, powdered milk, and cottonseed oil.

* * *

I Googled Christian Rural Overseas Program and ended up on the website of CWS: Church World Service.

I'm guessing it's the same organization. 

They seem to be a left-wing Christian organization.

I say this, because their website says: 

We know that racism and prejudice have no part in the just world that we want to live in. In 1996, we responded to an epidemic of burned and desecrated Black churches in the United States. Alongside our partners, we mobilized thousands of volunteers to help rebuild more than 80 churches. In 2020, we launched our Platform for Racial Justice.

That's very cool.

* * *

I'm not seeing anything on their website that says they used to be called Christian Rural Overseas Program.

Googling some more....

This Mennonite cousin of Lord Wiki says that Christian Rural Overseas Program worked under CWS.  CWS sponsored them.

* * *

The last column I'm going to look at for 1954, and this post, is December 20.

In this column, Roosevelt writes:

In thinking about this question of human rights, I have lately wondered whether anywhere in the world they are the concern of all the world or should be considered only as a domestic question.

And then she answers:

But the more I turn this over in my mind the more I feel convinced that, at least for those nations that signed the charter of the U.N., human rights must be viewed as the concern of all the nations and not only the concern of an individual nation.

I agree.

Though it can be complicated and difficult.  Because of....

A) Hypocrisy. It's hard to successfully point fingers at other countries when your country has its own problems

B) There's always that battle between minding our own business and saving the vulnerable.

C) The need to maintain diplomatic relations.

Judging countries is very similar to judging families.

Where do we draw the line between abuse/dysfunction/toxic vs. a  different-style-of-parenting?

When should we respect differences and when should we intervene?

(By intervening, I don't necessarily mean calling CPS. It could be a concerned email/ text; Or an in-person meeting; Or subtle hinting with memes on social media)

* * *

With families, there's probably less of a need to maintain diplomacy.

Well...there's still a need.  But the threats are more along the line of silent treatments and angry emails rather than oil access, Federal Aid, trade agreements, war, etc.  

Note: I write these posts over a few days and didn't realize until proofreading and editing that this kind of connects (maybe contradicts in some ways) what I wrote regarding the Elie Wiesel quote.  Or it doesn't really contradict it.  It's maybe more explaining why it might be difficult to speak out. BUT I think fear and hesitation about speaking out is understandable and somewhat sympathetic.  I think its' much different from pressuring others not to speak out.  

* * *

Getting to the Jewish/Israeli part of the column.

Roosevelt recommends some books.  One of them is a book called A Village by the Jordan by an Israeli named Joseph Baratz. Roosevelt says he's a friend of hers.  I wonder if she means a real friend or someone she had the pleasure of briefly meeting once or twice when she was in Israel.  

Used copies of the book are available on Amazon.  

I wonder if the book was ever (somewhat) popular. And if so, did Roosevelt help with that?  I wonder if she was like Oprah (or any modern day influencer).  Did things get a bump in popularity when she mentioned them?

* * *

Lord Wiki has a page on Baratz.

He was also a politician.  

Born in Russia, he immigrated to Palestine in 1906 at the age of 16.

At that time, Palestine was under the control of the Ottoman empire.

I really need to learn more about all these different stages of Israel.

Anyway....Baratz worked on Israel's first Kibbutz.  I think that's what the book was about.

Read my novel: The Dead are Online 

An Exhausting List of My Special Interests

I've decided to make a list of all most of my life's what I used-to call-obsessions but the autistic community labels as "Special Interests".

I will surely forget things.

I know this, because I've seen myself forgetting things.  I've been reading some 2006 journal entries and find myself being reminded of interests I had forgotten.  Or sometimes there are interests that I downplayed in my head.  But now I read my journal and think...Wow, I was super obsessed.

I'm going to try to go in chronological order.

Edited to add 4/6/24- I've now decided that many of these things were NOT special interests.  More about that...way, way below.  

Peter Pan

The Wizard of Oz

Roald Dahl books 

Annie

Savannah Smiles

Poltergeist

All of a Kind Family Books 

Michael Jackson (remembered and added 12/31/21)

Child Stars (especially Heather O'Rourke)

V

Disney World  (off and on through out my life starting at around age 10 or 11)

Days of our Lives 

Karate Kid II 

Asian culture/people (maybe bordering on racist/fetish kind of thing)

Cabbage Patch Dolls (remembered and added 1/1/22)

Mario Bros  

Stephen King Books 

Anne Rice books 

Pat Conroy Books 

Dean Koontz Books 

Nightmare on Elm Street (Especially the third movie)

Agnes of God  (added 3/1/22)

Cystic Fibrosis. 

Cruise vacations

Our Ouija Board (and the pretend-friends that went with that) (remembered and added 12/31/21)

The Lost Boys  (Remembered and added 12/31/21)

Born on the 4th of July (added 2/24/22)

Novel Writing 

Born Free (I had an Elsa AOL screenname way before Frozen)

Making collages 

Abnormal Psychology, especially Dissociative Personality Disorder 

Beetlejuice (remembered and added 1/2/22

Judaism

England (especially British people)

Andrew Lloyd Webber Musicals

Comparative Religion

Hook

My Girl. (Weeping Willow with your tears falling down. Why do you always weep and frown?)

Scrooged

Saturday Night Live (Edited to add 1/25/22)

J.M. Barrie 

Screenwriting

Primates (especially the Great Apes)

Titanic

Another World 

Neurofibromatosis (much shorter and less intense than Cystic Fibrosis.  But significant, because I wrote a novel and screenplay.  And I've used the title (Thirty Cats) for various screennames, including Instagram, which I'm on a lot).  

Wedding Planning. (hated the dress aspect but obsessed with music, cake, flowers)

a folder that shows
a combination of my wedding
and Disney special interest

The X-Files

Seinfeld

Friends.   (Edited to cross-out.  I started having doubts about this one, because I don't remember doing anything outside of watching the show with Tim)

Twelve Monkeys 

Parenting (especially attachment parenting)

Homeschooling

New York (a part of being homesick for where we previously lived)

Making/editing montage videos 

Food  

Nutrition

Weight Loss (This is and previous two all part of my eating disorder)

The Sims 2 (Remembered and added 1/3/22-was also into Sims and Sims 3 at other points but 2 was my favorite)

Eating Disorders (after realizing I actually might have an eating disorder...and all the imposter syndrome that went with that).

Charmed 

Lucid Dreams

Spirituality (especially reincarnation) 

Australia 

The Colbert Show

McLeod's Daughters 

Lost 

Wicked (Added 2/24/22) 

Twilight series 

Harry Potter (Peak year for me was probably 2010-2011.  Prior to that it would come and go with the release of the books.  But 2011 I got involved with role playing activities).

Singing, 

The King's Speech (Remembered and added 12/31/21

The Sing Off (Remembered and added 1/2/22

Modern Family 

The Big Bang Theory (added 3/23/22)

Desperate Housewives

Ugly Betty (added 3/24/22)

Doctor Who

American Horror Story

Minecraft 

The Walking Dead

Narcissism, toxic behavior, psychological manipulation, etc.

The Me Too Movement

Trump and American Politics 

Coronation Street

Game of Thrones (added 2/21/22)

Dark The Netflix series (added 2/21/22)

TV shows in general

Myoclonus and Epilepsy 

Cats (I've often considered cats more of a family member than an actual interest or obsession.  But there was an exception between the time that Max died and Annie found us.  In that time, we went to Japan where I had a strong desire to visit Cat Cafes) 

Covid 19 (and at some points through out the decades a special interest in pandemics in general)

Anti-racism (added 1/3/22) 

Schitt's Creek

St. Louis (this was kind of a budding one...and it was kind of pushed aside by the next one on the list...but now I've gotten a tiny bit back into it.  Maybe)

Autism

Duolingo (remembered and edited to add 12/31/21)

The Characters I'm creating for a novel I will probably never write or I will write and it will be something to add to my list of unpublished and/or unsuccessful writing projects.  (two of the characters live in St. Louis, so it gives me a chance to kindle that special interest) 

Disney vs. Florida Republicans (added 4/22/2022) 

This list is difficult not just because of forgetting things but because it's hard to see somethings as a special interest when I compare them to other things.  

For example, as much as I was into My Girl for a period of time, it's NOTHING compared to how much I was into the Poltergeist movies. 

And yes, I was into X-Files.  But it's nothing compared to how much I was into Lost.  

Although then I question that.  Was I really less into X-Files?  Or is it because there was less ability to obsess via the Internet in those days?  Or has the passage of time led to my forgetting how much I (might have) been into X-Files.

Other special interests seem small, because they are common and many other people are more intense in their fandomship. 

It's easier to feel as if something is a SPECIAL interest when our interest in it is unique.  For example, I don't think being obsessed with Cystic Fibrosis is very common.  Well, it might be more common these days, because it seems the disease has become more often used as a subject in fiction and nonfiction media.  But back when I had it as a special interest....I was quite unique.

I'm thinking, though, that commonality shouldn't disqualify a special interest.  Otherwise, we'd have to cross out trains and dinosaurs from childhood special interests.

Less intensity also shouldn't disqualify, because there will always be people who are more intense than us.

I feel I was probably VERY high up there in terms of having Australia as a special interest.  But that doesn't disqualify other people with a less intense special interest in Australia.  AND...there is probably someone out there who is/was even more obsessed with Australia than me.

The question that lingers in my mind and will probably continue to linger for a long, long time is where do we draw the line between autistic special interests and not-autistic special interests.

A part of the divide would, of course, be having other traits of autism.

I think EVERYONE has had at least one special interest in their life.  Besides the other traits of autism...maybe it's about the amount of special interests and the intensity.  Each special interest doesn't have to be intense.  But maybe it would be expected that there's at least a few that are very intense.  

I think, for fun, I'll make a scoring list for what traits make an interest a SPECIAL interest....aka a potentially autistic special interest.

If you are terrified of being a person with autism, this list might reassure you or terrify you.

If you are wanting to identify as autistic, this list might either reassure you or give you an imposter-syndrome induced meltdown.  

The List

2 points for every time you are distracted from what you're "supposed" to be thinking about or listening to, because you're daydreaming about your interest. 

2 points for every single time you Google the interest or something related.  (yes other search engines count).   Subtract 1 point for each search...if you're searching due to worry or fear. Though I think sometimes fears can become special interests.

5 additional points for every website about your interest that you actually spend time reading 

5 points for each social media account, related to your interest, that you follow

10 points for every book that you read pertaining to the interest. This includes fiction written by an author you're interested in..not including the first book you read by the author.  

10 points for each item you have purchased related to your interest

25 points for every time you rewatch an episode, scene, or see the movie again.  (an additional 20 points if you actually buy theater tickets to see it again or you re-rented it from Blockbusters)

30 points if you watch a show or movie you'd usually have very little interest in solely because an actor or actress from one of your special interest shows/movies is in it.

30 points if you have developed a crush on someone because they are connected to your special interest

40 points  if someone suggested that you talk too much about a special interest

40 points if when you played make-believe with your friends, you insisted the storyline be related to your special interest.  Add 50 additional points if this sentence, for you, should be in present tense rather than past.

40 points if when reading, watching other books/TV shows/movies you were fervently wishing you were watching/reading your interest-thing.

40 points if you have written fiction related to your interest.  Add an additional 10 points if the piece of fiction is a full-length project.  Add an additional 20 points if you've written more than one piece of fiction.  Add 100 points if you've written more than three pieces of fiction related to the interest.  

40 points if you managed to learn something that would normally be too challenging for you. 

40 points if you really want people around you to shut up other things and let you talk about your  interest.  Add 100 additional points if you've had this feeling for more than two days. Add 500 additional points if this has gone on for more than a month.  Add 1000 points if this has gone on for more than three years.

40 points if thinking about your special interest brings you a sense of comfort when you're needing comforting or distraction.

50 points if you have gone to a convention because of your special interest.  Subtract 45 of those points if you went only because your friends went.  Subtract 49 of those points if you went mainly because your romantic partner or interest wanted to go.  

50 points if your interest led you to choosing your college major or minor.

50 points if you have a career related to your interest (Add 100 additional points if having that career didn't end your special interest)

50 points if your interest inspired you to do volunteer work. Add 20 more points for each additional event or project or night you slept away from home because of the volunteer work.

50 points if you've made charity donations related to your special interest.

50 points if your special interest led you to writing a pointed message that got you into trouble

50 points for each time you have not been there for a family member or friend when you should have been there...because of a special interest.  For example, you didn't attend your brother's wedding, because you wanted to be there for the midnight release of a Harry Potter book.  

50 points if your interest led you to doing something that would normally terrify you

50 points if you have an email address or social media screenname related to the interest

50 points if the passion for your interest led to you being arrested.  Add 10 additional points if you were convicted.  Subtract 50 points if you are Black.  Add an additional 50 points if you are convicted and in prison despite being white and upper middle class.  

60 points if there was a golden apple on your 5th grade teacher's desk and you had this very strong wish/fantasy that this apple was magic and would transfer you to the fictional universe of your interest.

60 points if you have a blog, Instagram account, YouTube channel, podcast, etc. that is dedicated to your interest and add 50 extra points for every year that you've had the account, etc.  If you don't have an account specific to the interest, add 5 points for every post or episode you've done about the interest.  

75 points if you kept your interest a secret for awhile either because it was intense, overwhelming, sacred, etc.

75 points if you tried to deter yourself from the interest because the intensity of your feelings scared you or you didn't want to go through THAT again.  

75 points if people skip over the usual small talk conversation topic and ask you about your special interest

75 points if you're not usually socially motivated but if people have a connection to your special interest, you are suddenly motivated to be social with them.

100 points if you have a book related to your special interest that you carry around like a comfort object...or any other item.  Subtract 50 of those points if the item is soft or cuddly (and you're under the age of 12) OR if the object brings you positive attention from others.  

150 points if someone asks if you've been tested for autism when you talk about your interest. Subtract 100 of those points if the person asking you is like me and is currently seeing autism in pretty much everybody.  

200 points if you have gone on trips to places specifically because of your special interest. Add another 50 points for each time you returned to the place.

200 points if you have been interviewed on TV or a podcast to talk about your interest...not about your interest in general but to showcase you as an obsessed person.  Add 50 additional points for each additional times you've been interviewed OR asked to be interviewed.  Add another additional 50 points if it was national TV or a popular program.

Okay...that was a lot of fun making the list.  But I have no idea how to do the silly or fancy math needed to come up with "correct" minimums.  

I'll try.

If anyone doesn't agree with my divisions, please argue with me (politely....or at least without death threats...or at least without gruesome death threats...or if gruesome, please be creative and make it more blood centered than rape centered)

So....How about?

5-50 points - a minor special interest

51-200 points - a major special interest

200-1000 points- a MAJOR MAJOR special interest

more than 1000 points?  Holy shit!!!!

As for autism....

If you have at least one special interest in the holy shit category, I'd read up on the other traits and seriously consider that you might be autistic.

Same goes for those who have at least 2 in the MAJOR MAJOR category.

Or at least 5 in the Major category

Or 30 in the minor category. 

If the label autistic scares you, because you're picturing Dustin Hoffman rambling about the safety of Qantas or the virtues of Kmart underwear, you could take up the alternative labels of Intense, On the Spectrum, Aspie, Living with Intensity, HSP (highly sensitive Person, Crystal Child, Indigo Child, ADHD, etc.

They all pretty much mean the same thing.  

Again, this list is not at all scientific.  But if it's fun for you or helps temporarily relieve you of any imposter syndrome....very cool.  

Edited to add 4/6/2024:  I've come to realize that a lot of what I listed above were NOT special interests. And now I've come up with new categories to describe other types of interests. 

So here we go....

Besides special interests, I've had

A) Stressful interests

B) Hobbies

C) Passing interests

Stressful interests are where I research something, because I seek validation, ammunition for arguments/debates, reassurance, etc.   

Hobbies are things I like to do but I'm not especially interested in them.  I would rather just do them than Google them, watch YouTube videos about it, etc.  

Examples of this for me lately would be playing The Simpsons Tapped Out, feeding wildlife, and taking care of the plants in my backyard. I might Google if I need to know something for practical reasons but not just for the sake of wanting to learn more and having that extreme passionate enjoyment.  

I love playing The Simpsons and have in rare instances Googled to find something out...such as: will planting Triffids end the game?   

If the game was a special interest, I'd probably want to watch videos of other people playing, watch the actual TV show, learn about every voice actor, etc.

Passing interests are when I love something, because I'm currently reading it or watching it...or visiting a place.  I'll get really into it for a short period and then I move on.

Often these feelings are recurring, because we revisit the place or a new season of the show comes out.

An example would be Dark. I loved that show.  And each time we watched a season, I obsessed over it a bit.  I listened to the music on Spotify. I Googled to figure out how the hell each character was connected, etc.  But a few days after watching a season, the interest would fade, and I'd have a new passing interest.  

Now....sometimes there will be some kind of lingering aspect.  For example, I still listen to music from Dark occasionally.  Mostly, because it's still on some of my playlists.  

I've been learning French the past eight years or so. Why?  Because we watched Les Revenants.  My interest in the show soon faded, but the French stayed with me as one of my hobbies.  

I thought it would be easy to go through the list and label most things as NOT special-interests.

It turns out it's not.

The problem is probably due to comparisons.

My special interests in Poltergeist, Cystic Fibrosis, and Australia played such a huge role in my life.  Other things seem small in comparison.  But when I think back carefully, I realize they too were special interests.

The three above were, I guess, my BIG Special interests. Or my Super-Special interests.

Judaism might fit in with the three above.  

Medium to small special interests: Annie, Savanah Smiles, Nightmare on Elm Street, V, Great Apes, Dissociative Identity Disorder.

Most of the TV shows and books would be passing interests even those I love a lot such as Doctor Who and Lost.  

Stressful interests: parenting, homeschooling, dreams and spirituality, eating disorders, myoclonus/seizures, narcissism/toxic behavior, autism, the MeToo-Movement, Trump, Covid, anti-racism, Israel

Hobbies: novel-writing, singing, screenwriting, collage-making, making videos, The Sims, Minecraft, Duolingo, dieting/eating, feeding wildlife, gardening, photography, AI art, etc.  

Note: Parenting in itself wasn't a stressful interest.  Though it's extremely stressful (along with extremely wonderful).  But what I'm referring to is the excessive reading of parenting books, websites, magazines, etc. in pursuit of reassuring ourselves that we're not destroying the soul of the tiny person living in our home.  The obsessing over breastfeeding, sleep, nutrition, discipline, education, etc.  

What They Said about Me in 1979 and 1980

Continued from the previous post.....

Below are more of my physical/occupational therapy notes from early childhood (at John Muir Elementary School in Madison Wisconsin)

In May 1979, towards the end of my kindergarten year, the therapists said:  

Adina is a 6 year old ambulatory girl in the kindergarten class. She is seen four times weekly by the OT/Pt or therapy assistant. Treatment emphasis has been to increase general muscle strength and improve motor planning and fine motor skills.

Adina continues to exhibit general weakness of muscles but participates well in strengthening activities.  She has tightness of the hamstring muscles which may continue to gross motor difficulty. She performs stretching exercises regularly and has shown noticeable improvement. She is now able to touch her toes with straight legs after passive range of motion to her hips and knees.

I remember a little bit of the therapy.  I think there was something with them lifting my legs up and down...probably stretching the muscle.

Adina also participates in hand strengthening and coordination exercises. Her hands are still weak but her prehension pattern is improving. She is beginning to use a more adult type grasp.  Shoulder girdle weakness is still present as shown by her fine motor coordination. Her motions are still shoulder directed when performing fine motor tasks. Her endurance for performing gross and fine motor skills is improving but this area skill needs to be worked on.

Kind of strange that I'm expected to use a more-adult type grasp at 6-years-old.  I get what they're trying to say. But it seems it would have been better to describe it as more "Age-appropriate" or "age-typical". 

Adina performs self-directed activities confidently however seems apprehensive in gross movement activities that are directed by someone else. She often responds "It's too hard" "Is this good?" or "I'm scared". Demonstration, encouragement, and repetition have increased her success and self-confidence. She is cooperative and enjoyable to work with.

Now moving onto first grade....

In May, towards the end of the school year, they said:

Adina is a 7 year old girl in the first grade. She receives OT/PT services four times per week by the OT/PT or Therapy Assistant.

Adina has primarily worked on general strengthening activities. She has demonstrated improved shoulder girdle strength and stability through increased amounts of exercises such as wheelbarrows and dental dam.

I know what wheelbarrows are.  But what the hell are dental dams?

Also I'm wondering if I know what wheelbarrows are, because I remember it from therapy.  Or did I encounter it later in life somewhere?  I mean did I see it somewhere?

Well, I just Googled dental dams along with physical therapy and then occupational therapy.  I found nothing except literal mouth related stuff.

I'm wondering if the person writing the report was thinking of her teeth issues or her child's teeth issues when writing the report.  Maybe she wrote the wrong thing and no one noticed.  Or they did notice, but they didn't have the Internet back then.  They couldn't look it up.  Maybe everyone who read over the report assumed they themselves were the ignorant ones instead of assuming the writer made a mistake.

OR maybe there really was a therapy exercise called Dental Dam in 1980, and it's so obsolete that even Google is unaware of it.  OR maybe if I kept scrolling through Google, I'd find something about it.

Maybe I'll try again.....

I Googled dental dam and Gross Motor skill.  I got stuff about oral sex....which I had also seen when I did the term with physical and occupational therapy.

Well.  I give up.

Continuing with the report.....

She has shown the ability to maintain trunk extension while simultaneously coordinating a bilateral fine motor activity. She continues to need practice of gross motor skills however seems to have a better awareness of her body and more self confidence which allow her to learn new skills more quickly.

Lower extremity range of motion has been maintained through passive and active stretching of the hamstring muscles.

Hand and finger strength remain weak but Adina has shown improvement in coordination in fine motor activities such as pinching clothespins or small pegboards.  She uses a tripod adaption on her writing utensil to promote proper prehension.

I remember the adaption.  I think it was a rubber thing.  I'm picturing something red....

As tested on the Frostig Test of Visual Perception, Adina scored an age equivalent of 7-0 on the Eye-Motor Coordination section.  This is compared to the 4-9 age equivalent scored last year.  She showed improvement in all areas tested as listed below.

And then there's a comparison of scores:

With Eye Motor Coordination, I went from 4-9 to 7-0

Figure Ground, 4-9 to 5-3

Form Constancy 7-0 to 8-3

Position in Space 5-0 to 7-0

Spatial Relations 5-6 to 7-6.

I really wish I knew what all that meant.

Although at least (I think) I can understand that my biggest weakness was Figure Ground, and my biggest strength was Form Constancy.  

I think maybe my biggest improvements were in eye motor coordination and spatial relations?  

I just Googled.  Figure Ground is a problem with finding a visual among a lot of noise.  They give the example of Where's Waldo.

I'm not sure if I'm still bad at that or not.  I feel I'm probably average.   

Or maybe it's something I did improve on significantly. One of the symptoms of being challenged in the area is struggling with reading books with many words.  I don't think that's been an issue for me in life.

As for what I was strong in, Form Constancy,  that's the ability to recognize the same object or type of object in different situations.  So it's like if you take a chocolate chip cookie out of the kitchen and put it in your lunch box, you still know it's a chocolate chip cookie when you see it later.

If applied to academic stuff, being disabled in that area could make education especially challenging.  It really helps to recognize numbers and letters in a variety of situations and setting.  

Along with Adina's over all improvements in skill has been her increased self-confidence. She no longer required reassurance in everything she does and is motivated to try new things.

There may have been improvements.  But I will say that there wasn't enough.

Adina has made some significant gains this year and it is felt that her progress can be maintained through a home program of exercises and encouragement of skill development through play. Therapy will be discontinued at the end of the school year with recommendations for a home program.

Though I didn't like therapy, and seven-year-old Adina was probably very pleased for it to end, now I look back and feel somewhat abandoned.  

Sadly one of the reasons I hated therapy was some major ableism. The therapists who worked with me also worked with severely mentally and/or physically disabled students.  I saw them as less-then, and I worried that I was like them or that other students at the school would see me as being like them.  

Along with that, I think there was some physical discomfort in the therapy itself.  

Now...the other thing I have with me is a report card from first grade.  

This goes back in time a bit, because it was written for the first semester.  The therapy report would have been written at the end of the second semester.

I got an S in most areas which is for satisfactory and the highest grade possible.

I got I's (improving) in penmanship.  Probably....thanks to the therapists.

I got an N in Language Arts for oral expression.  It kind of sucks to be a child who can't communicate well orally but then has shitty handwriting so can't communicate well that way either.  Later I would learn to type, and I've always been quite good at that. So that's nice.

In Social Studies, I got an N for contributing to class discussion...and the same goes for science.  

In science I also got an N for "exhibits curiosity".  Did I really lack curiosity?  Or did I merely lack the ability to communicate that curiosity?  Or was it that I lacked curiosity about things that were not currently a special interest of mine?  

Under learning skills, I got an N for participating in class.  The teacher was really driving home that theme.

The report also has lots of comments.

For reading: Adina shows good progress in reading.

At some point, I remember my best friend pointing out that everyone but me could read.  That was either kindergarten or first grade.  It took me a bit longer than the other kids in the class to pick up the skill but once I did, I really took off with it. 

For math: Seems to have a good hold of math concepts.

I think that's true still today.  It's not a GREAT hold.  But...it's good.  Or sort of good. 

For language arts: Adina's writing has improved greatly. She is very soft spoken.  The teacher underlined very soft-spoken twice.  

For social studies: Although she rarely participates verbally, Adina seems to enjoy our study films and discussions.

I'm intrigued by that.  Does that mean most or all of social studies was taught through films?  OR...did it mean I didn't usually show enjoyment of class.  But I did enjoy it when we had films.

The latter seems more likely.

For learning skills: Adina is a conscientious worker.  I wish she would feel like smiling more often.  She is a fun student.

I like that she said she wishes I FELT like smiling more. That's much better than those who wish we'd smile more; fuck how we're feeling inside.

One of the complaints I've heard in terms of ABA therapy is that it's about getting autistic kids to ACT more typical and more pleasant...and let's not care so much about how the kids are actually feeling.

That being said....

It can also be problematic to wish for people to have certain emotions. I think it depends on the meaning behind the wish.  

Well...actually, I take that back.

I think it's quite okay to WISH people had certain emotions.  Most decent adults are going to wish for the kids in their life to be happier.  Wishing is different than demanding, shaming, or guilting them into having more positive emotions.  

So....

I feel compelled to add that something going through my head while transcribing all this is that this was probably the school year that my dad had me watching parts of The Exorcist which was very traumatizing for me.  

I think it would be hard enough for an outgoing, self-confident, smiley young child to watch the movie.  But I wasn't any of that.  I was a timid, soft-spoken, fearful child with low self-esteem.

My sister Melissa recently asked me...and I've asked often asked myself.  Would my life have been better if I had been diagnosed with autism when I was young?  I really don't know.  But maybe one thing I would have been spared is the whole Exorcist drama.  Maybe if my issues had been given a stronger label, my parents would have been given more sympathy and protection.  

That being said....just reading the report cards and therapy reports makes me feel sympathetic and protective.  But maybe that's because it's myself.  And also...I know what happens in the further chapters of the story.  

 Read my novel: The Dead are Online 

Reasons For Me NOT to Get an Autism Diagnosis

I've been struggling to decide if I will someday pursue getting an official diagnosis of autism.  At this point, I'm leaning towards no.  This post shall go over the reasons swimming around in my brain for such a decision.  

1. It's way too expensive.  From what I've seen, it costs around $2000-$3000 dollars.  

At a place I know of in Dallas, base rate for a general evaluation for adults is $2500.  That looks at various psychological things. And then autism is an add-on for $500.  So that's $3000.

I have found only one therapist who does autism testing for adults in Fort Worth (where I live).  Their website doesn't provide the fee for testing. But they do say that the therapist, who does the testing, has a $200 per hour fee. I guess I could talk really fast and get a better price that way.

The cost of a diagnosis is not out of our financial range. We would not have to sacrifice housing, medication, meals, electricity, etc.  

But there are other fun things we could buy or do with $3000, such as a virtual reality set, Disney tickets, plane tickets to an international destination, more cat scratching towers.....

Counterargument: I don't have ANY decent counterarguments against using the money for travel adventures instead. But I do see some validity in supporting the career of someone who worked hard to become a psychologist or psychiatrist. Then maybe SHE can buy Disney tickets for her family.  

2.  If I seek a diagnosis, I feel I'm very much playing into the mindset of autism being pathological—a disease, disorder, etc.  

Homosexuality is no longer in the DSM.  

I would like autism to go down a similar path. 

That's not to say autistic people don't need extra support. But a lot of that need is related to societal prejudices and rigid definitions of what kind of minds and behaviors are acceptable.  

Being gay is not a pathology. It's not a disease or disorder. But gay people do need special support. And what does that support look like? Well, a big thing is society letting go of the notion that marriage must be only between people of the opposite gender.  

Acceptance to the point of changing customs, laws, and expectations is a huge form of support.  

I hope for a future where parents don't look out for red flags; then, in tears, rush their child to their pediatrician. Instead they chat casually at playgroup.  Hey, my child is really into lining up her car toys, and she refuses to eat any food covered in sauce. I think she's autistic!  And then another mom replies. Oh, that's so cute!  My kid is autistic too!  

And I know not all autism is easy, casual, or only slightly challenging.

A child might have dangerous stims such as banging their head against the wall or picking at their skin until it bleeds. They might have huge meltdowns.  But maybe instead of getting a diagnosis and treatment for autism, they simply get help for those specific problems.  

Autism does have many comorbidities—epilepsy, eating disorders, OCD, anxiety, depression, gastro-issues, sleep disorders.

But you know what else has comorbidities? Being an Ashkenazi Jew,  But we don't go to a doctor to get diagnosed as Jewish.   

Let's say the kid who lines up the cars begins to have huge meltdowns. The mother wouldn't go to a psychologist to get a diagnosis. She would already know her child is autistic, because A) she can read and do research on what being autistic entails B) She knows her child more than anyone.

So, she goes to the therapist not for a diagnosis but to seek out advice and help for her child.  

I think we need to stop relying on professionals to tell us who we are and/or what we're feeling.  Instead I think going to professionals  should be more about getting help in working through our struggles.   

Counterargument: The future I hope for may never happen or if it does happen, it will probably be decades from now.  I think diagnosism is going to stay very relevant, unfortunately. 

I have felt very invalidated through out my life—about my feelings, about my health problems, about my mental health issues, about my singing, my writing, interpersonal issues, etc.  Being undiagnosed in a world where getting a diagnosis is an important prerequisite to getting understanding, compassion, and validation sometimes seems too hard for me to handle.

Counter-counter-argument: I WAS officially diagnosed with a DVT and the response I've gotten from most people about that seemed to be pretty much disinterest, indifference, and covert attempts at shaming.  So...... 

 3. Getting a diagnosis won't rid me of my imposter syndrome.

When I first started writing about autism in April, I imagined I might be the first person to see imposter syndrome as something that could happen with something like autism rather than a career-related situation.

It turns out I was very wrong. Imposter syndrome is a subject that is often mentioned in the autistic community.

And from what I've seen from autistic influencers who are professionally diagnosed, getting the diagnosis does not fully cure people of imposter syndrome.  Even without hearing their personal experiences, though, I think I'd still have my doubts.  

I don't have full faith in doctors and/or psychologists.  

I think my imposter syndrome would go like this: Maybe I'm wrong. Maybe I'm not autistic. No! I am autistic. The psychologist said so!  But...what if she's wrong?  Or what if she's just made a career of giving people the labels they desire for themselves?  

Counterargument: Even if my imposter syndrome isn't cured with a diagnosis, it might lessen it a bit.  And even a small reduction in those feelings might be really nice.

Counter-counter argument: There's the chance that the psychologist says I'm NOT autistic which will greatly increase the imposter syndrome.  

4. I hate appointments 

I haven't gone to a hair appointment in about 17 years.

I went many years without going to the dentist.  I finally started up again after my tooth broke. I did a year or two of being good about doing dental appointments. Then I quit again.

It took me ten months to finally go to a neurologist for my myoclonus symptoms. And that led eventually to a huge horrible mess.  I didn't end the story with a feeling of, wow. I'm so glad I got help for that!

I don't like the dread I feel after making the appointment, and I don't like the one on one interaction of having an appointment.

I had grand plans for this summer. I was going to go to the doctor to get referrals for a dermatologist and psychologist/psychiatrist.  

I kept putting it off and then I decided I just don't want to do it.  

Counterarguments: Avoiding appointments is probably not a very healthy choice and probably something I need to work through.  Though I am pretty okay at cutting my own hair. 

5. I will imagine the therapist doesn't like me

I tend to feel very judged by people. That probably explains the above issue of not liking one on one interactions.

I often feel anxious with worries of being perceived as mentally unhealthy, unlikeable, creepy, a pariah, an attention-seeker, a bad person, etc.   

I did online therapy a few months ago and worried I was writing too much; taking too much of the therapist's time; that my problems were ridiculous to him, etc.  As I wrote in this post, some of these feelings come from projecting my own self-esteem issues onto others.  

Counterargument: It's likely that a lot of my self-esteem issues are related to my autistic traits. And it could turn out that the therapist's mindset is more in line with a neurodiversity view of autism than a pathological/medical viewpoint.  Instead of viewing me as a "very off" neurotypical person, she might view me as a cool autistic person.  There's a chance she might not only give me the gift of a diagnosis but also provide me with inspiration, advice, compassion, etc...various things that might help me with my self-esteem.

Counter-counter argument: It seems just as likely to me that the therapist will be the type who A) thinks I'm not Sheldon Cooper or Shaun Murphy enough to be diagnosed with autism.  B) Sees all my autistic traits as something that needs to be overcome. 

6. I will be all messed up and confused about my behavior. 

Am I taking off the (neurotypical) mask or am I putting on a mask?  In most situations I probably try hard to appear "normal" especially if I feel I'm going to be judged. But in this case, do I try to NOT try to appear normal?  

I've heard multiple stories of people being denied diagnosis, because they were able to make eye contact. Should I then avoid eye contact? 

No, because if I fake any symptom and end up with a diagnosis....that's really not going to do well for my imposter syndrome.  

But then what if I end up making extra eye contact just to overcompensate for these confusing feelings?

I also can totally imagine that I would be hyper-aware of any stimming I end up doing and then question whether I'm doing it subconsciously on purpose. Okay. Yeah. That's a contradiction.  I know.  What I mean is: my subconscious might be doing it for wanting-to-be-autistic reasons.

One day I was in the kitchen and suddenly noticed I was flapping/shaking my hands. It felt so normal and natural to me. But I had no idea if it's something I've always done and not noticed. Or if by reading so much about autism, I subconsciously picked it up.

I'm now realizing it might be something I've done when my hands are wet or I have crumbs or food on my hands.  A couple of years ago, Tim saw me shaking my hands and thought my neurological symptoms had worsened and became more noticeable.  But no...it was more of a habit thing.

One thing I've realized with habit kind of movements/stimming vs involuntary movements is that with the latter I very much notice it.  

I definitely notice immediately when my toe twitches and then both my arms jump.  But it took me awhile to notice that while writing this I've been scratching my right foot with my left toenail. I probably wouldn't have noticed it, at all, if I hadn't been writing about stims.  

Counter Argument: If I go to the appointment, it might be entertaining to my future self (and other readers) to read about all these messed up feelings I end up having during the actual appointment. 

I mean...looking at the bright side, my neurologist nightmare provided me with material for several blog posts.  

7. I feel it is unfair to people who can't afford the diagnosis and despite my best intentions, I might end up seeing my autism as more valid than those who are self-diagnosed.  

People in the autism community tend to say that self-diagnosis is valid. Though then they say and do things that make me feel they don't completely mean that. For example....they might not start their journey as an autistic influencer UNTIL they've gotten that official stamp.  

Though I feel people shouldn't wear their diagnosis as a badge. Though I feel we should stop this mentality of diagnosism when it comes to mental illness or neurological differences....I think if I get a diagnosis, I might go astray from those values.  

Counterargument: I can get a diagnosis but make it a point to stay true to the values that I value. I can make sure to remind myself of the financial and racial barriers to getting a diagnosis. I can also remember how I felt as an undiagnosed person, etc.  

8. Getting a diagnosis will be time consuming.  

I am blessed with more disposable free time than most people.  But I have a huge to-watch list, and I'm really into Minecraft lately.  

Counterargument: Is there one?  I'm trying to build a city in Minecraft with multiple skyscrapers. And this is on survival mode, normal and NOT with a flat world seed.

Architecture is not one of my talents, actually. 

 

Update (3/1/21)  After (despite) saying all the above....I am now pursuing an Autism diagnosis via an autistic therapist in Canada.  We shall see how that goes.  I love the idea of being diagnosed by someone who is professionally qualified and ALSO autistic herself.  I also like that the process involves an initial screening.  If they don't think you're autistic (which will yes be devastating to me), you don't need to go through the second part which is more intensive and expensive.  So I can be devastated and have identity confusion, BUT at the same time, I will feel like I'm saying money.  Maybe I'll use that money to buy myself oh-shit-I'm-not-autistic presents.  

Reading my novel: The Dead are Online 

Quotes about Autism (Part 2)

I'm on a journey of learning-about-autism.

Below are quotes about autism. Some validate what I'm thinking. Some open my mind to new things. Some annoy me. Some make me angry.  

For a better idea of what the hell I'm doing here and why Part 1 will explain things) 

Note: If I have no comments about a quote, it's probably because I agree with it and don't have anything valuable to add.

1. From: If You Can Use Social Media You are High Functioning or Have Mild Autism by David Gray-Hammond :

But functioning labels are a myth. They harm the person being deemed “high functioning” or “mild” by neglecting to acknowledge their struggles. They harm the person being deemed “low functioning” or “severe” by neglecting to acknowledge their ability and humanity.

I think when people talk about functioning, what they're probably really talking about is how obvious is our autism. Are we so visually autistic that people can tell as soon as they see us?  

Does someone need to have a conversation with us and then they know?  

Would it take several get-togethers for our autism to be revealed?  

Would someone have to know us for years?

Might our autism be so hidden that even those closest to us don't see it?

 I think often people care more about how we're behaving than how we're feeling. It's more about what we show than it is about what we hide.

Though I think what I'm talking about here is less about professional diagnosis and more labels given by friends, family, classmates, neighbors, coworkers, strangers we run into, etc.  

2. From: The Crossroads of Being Autistic and Queer by Autistic Science Person:

Of course the assumptions come in first, like “You must be very high-functioning!” (trying to give me a compliment), and “Well, you don’t look autistic!” (also trying to give me a compliment). 

I can very much relate to this. I've gotten the high-functioning comment...meant as a compliment or to be reassuring. I didn't take much offense, because I was feeling so relieved, so validated that the person seemed to agree with my self-diagnosis in the first place. I really expected to get more resistance from them. 

3. From: 5 Million Grant Awarded to Make Autistics Mask in Job Interviews by Autistic Science Person:

The reason we can’t do well on interviews isn’t because we aren’t trying hard enough to pretend to be neurotypical. It’s because the interview process itself is stacked against us, almost as if to weed us out by default.

What else are interviews for except to make sure that we're neurotypical enough?  That we're not too awkward or too shy.  That we won't make our coworkers, or the customers, uncomfortable by being too weird.

I think there are some jobs that, by nature, are better suited for neurotypical people. And for those jobs, it makes sense to have face to face interviews.  But for other jobs, I think other things could be tried such as portfolios, observations, written interviews, etc.  

4. From the same: 

Many neurotypical people refuse to assess their own sensory system, and how maybe they could get used to a quieter, slightly dimmer environment for once. Maybe they can change. Maybe they can, just once, consider how exhausting it is to be told, over and over again, that you are the problem.

I think it would be great to write a story in which autism becomes what's typical, and the not-autistic children are put into therapy to change them into acting more autistic.  

5. From: Toxic Positivity, Gaslighting, and Tone Policing Autistic People by Aprenderaquereme:

In therapy and education, so many times children are told to “use your words,” which has a problematic background. The message that sends is, “Adults won’t listen to you if you show your most overwhelming emotions.” This is even more problematic for autistic people, as we do not always have access to spoken language, we have no choice but to give up in our difficult moment.

In my time as a preschool teacher, mother of a small child, and aunt, I am guessing I have said, Use your words. 

The underlying meaning is to communicate with our voices instead of our fists, feet, a sharp object, etc.

I can now see why it could be problematic. 

I don't think it's definitely a problem for children who can speak well...or who can use sign language or write.

I think it definitely is a problem if what the adult is really saying is, use your words and make sure the words show obedience, reverence, and an attitude of positivity.  This is hard to do when you're scared, angry, overwhelmed, feel threatened, etc.  

6. From: Sixteen Year Old Killed by Restraint. It's Time for Comfort Over Control by C.L Lynch:

Perhaps the most aggravating and frustrating aspect of these horrific deaths is the fact that they so often occur at specialized facilities which boast of being specially equipped to handle students with behavioral difficulties.

Often using terms like “positive behavioral support” or “behavioral health,” these schools claim to have highly-trained staff who are skilled in serving students with behavioral difficulties. They list restraint as a method of “last resort” to protect the safety of other staff and students.

And yet, every time this occurs, the description of the incident never remotely seems to justify the level of force being used. A 13-year-old spitting does not appear to be a “last resort” type of incident. Nor does an autistic teen who wants to keep playing basketball. Or a hyperactive seven-year-old unable to hold herself still. 

7. Also from the above: 

For example, Vancouver-based Dr. Vanessa Lapoint, a child psychologist and author of Discipline Without Damage, has advised against using reward systems in helping children manage their behaviour. Increasing the consequences of behaviour that they might not be able to control can result in the loss of hoped-for rewards, which is, in itself, punishing. 

Wow. I never saw it put that way. But it makes a lot of sense.

I can relate to this as a parent. 

Once someone has the hope of having something, denying them what they had hoped for is probably just as painful as taking something away that they already had.  

In the best situation involving rewards, the child behaves the way the adult wanted them to behave. The child gets the reward.

If the child doesn't behave, the hope is that the adults will have the strength to withhold the reward. The child is disappointed and a little sad but learns their lesson and plans to try harder to achieve the award in the future.

The reality is often that the child is absolutely devastated. They cry. They scream. They may become violent or destructive. If the adult has a normal or above-normal amount of empathy, the whole process is likely to crumble.  

Some adults have the personality that's needed to pull off the whole reward and punishment thing.  They are good at standing their ground, making good on their threats, and withholding unachieved rewards.  

Other adults (like me) are really bad at it. We have the skills needed to offer the possibility of a reward or make threats of a punishment. But we fuck it up when it comes to the whole execution step.  

I have my doubts, though, that being good at it makes someone a better parent, teacher, grandparent, caretaker, etc.  I also doubt that it extinguishes the undesired behaviors.  Short-term? Maybe. Longterm with negative mental health consequences?  Also a maybe.  

Being bad at it, though, is also not going to lead to positive outcomes.

All in all, it's probably best to avoid reward and punishment discipline as much as possible. OR at least save it for situations where it seems likely the child will succeed. 

8. Also from the above:

and that means you need flexible role models who understand the child’s abilities and focus on soothing the emotions, not controlling the behaviors. They insist that you need to build emotional intelligence and emotional management skills… not reward and punish outward behaviours over which the child often has no control.

Yeah. That's a good idea.

9. From Yo Samdy Sam's video on Autism Comorbidities:  

About depression and anxiety, she says:

I've had periods of my life where I've been really depressed, and I've had periods of my life where I've been extremely anxious; acutely anxious. You know the sort of fear.  But all through my life, there's been a low-lying anxiety and depression, which I don't know if it's enough to count as an anxiety disorder.....

But I also do think in some ways that it is a natural response and a rational response to living in a world that is not made for us and is actively hostile to our needs.

And I don't know whether that is a controversial opinion or not. I think it's rational to be depressed sometimes. If you watch the news, and you see things; see the state of the world, it can make you feel very powerless and depressed. 

This is very much in line with my way of thinking about depression and anxiety. And from my experience, it is VERY controversial.  

I think the medical model of depression and anxiety is very dominant in our society, and you can get a lot of hate and anger if you veer off that course.  

10. From: Culture and Politics or Why a Neurodiversity Paradigm is Left of Center by Michelle Sara:

Finally, stop forcing your personal value of independence on them; the ability to live independently is not a universally-held value, and I’m tired of people trying to justify their eugenics-like opinions about autism by implying that a life without independence isn’t worth living. Many disabled people who will never have independence have written on this topic.

This emphasis on independence is a conservative value, whether we acknowledge it or not. The idea is that if you can’t be responsible for yourself, then someone else has to be responsible for you; you’re a burden on society rather than a working cog in the machine.

11. From: On Autism and Intelligence Language and Advocacy by Terra Vance.

About the word "Disability", Vance writes:

In disability circles, it simply means that a person has a need and a right to accommodations because the world is not designed for them. It means that they require support or reasonable adjustments to environments, not that they are useless, incapable of achieving, or less human.

12. Also from the above in regards to the idea of functioning labels in autism.

With autism especially, the degree to how well someone functions is largely depending on the social context where an autistic person exists. If a workplace fails to make sensory accommodations, the most skilled and talented employee in the workforce may be completely unable to work there at all.

I just want to say that I've wasted about two hours writing personal stuff about my own experiences; than deleting it.

I don't know.....

I'm just wanting to share my pain and frustration. No, not about autistic.  I mean about all this writing and deleting.  

Actually....I think I'm going to stop this post here and stop doing these posts.

I thought it was a good idea, and I'm kind of glad I tried it.  But I feel it's causing me more stress than...well, anything very positive.

First of all, I find myself reading in pursuit of cutting, pasting, and responding. And in a way, I think right now I need to do more reading, understanding, and...privately reflecting on my own experiences.  

I think a lot of my blog is thinking aloud and confessing.  I'm not sure if this is the right thing for me to do at the moment.  

The other thing is, I worry that these posts are difficult and not-pleasurable to read.  Is it too disjointed with me jumping from quote to quote?  

I'm not sure if the quotes I'm sharing are as powerful, as they feel to me, when taken out of context.  

Shit....

Well, now I've read over my post so I could hurry up and post it.  I kind of like what I wrote.  Well, duh. Of course, I like it.  Otherwise, I'd just delete this instead of reading it over/proofreading.

I still feel it's probably too disjointed for most people to enjoy or learn from. But there might be a few people who find value in it.

If anything...future me will appreciate it.  Probably when I'm like 70, I'll really love looking back and reading this.

I think what I need to do, though, is slow down.  I was going slow at first...taking my time.  With the last post, I did well with that.  Now I've kind of gone downhill.  Reading too fast...almost skimming sometimes to find quotes I'd like to put in my blog post.  

With writings that I ended up quoting from, I did read more slowly and carefully.  But there are essays and articles that I skimmed through with the attitude of, Nah, I don't think I'm going to want to share anything from this. Skip!

I don't want to do that.

Anyway, with all my rambling...this is already long.  So I think I will end THIS post here. And I will maybe start a third post. Hopefully it won't be finished for several weeks because I'm taking my time——  not rushing, not skimming, not pouring my heart out; then deleting.......

Read my novel: The Dead are Online