How my daughter can explain her own diagnosis

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MikeandMike
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06 Apr 2019, 8:54 pm

Hello everyone. This is my first time posting. I am the father of a 9-year-old girl who was diagnosed ASD at the age of 6.
Her mother and I sat down earlier tonight to talk to her about her diagnosis for the first time. It felt like the time was right, but while the initial talk went well, I feel like we left some loose ends untied, and I wanted to seek advice from the community here.

To give a bit of background, my daughter is high-functioning (for lack of a better term). She is gifted verbally, has aptitudes for math and music, and is generally friendly, gregarious and sociable. However, she struggles with emotional regulation, cognitive rigidity, attention issues (which earned her an additional diagnosis of ADHD), executive function, and more nuanced social skills (particularly perspective taking and theory of mind).

The emotional regulation part has been her biggest struggle as it interferes with regularly with her every-day functioning, and is particularly disruptive at school. She's prone extreme emotional episodes, explosions of anger or frustration, meltdowns, etc. And it's this experience of hers that prompted us telling her about her diagnosis, since now that she's in 3rd grade, she's at the point where none of the other kids around her are having episodes like this, and she notices that she's different. We felt that her knowing at least something about her cognitive profile would help her understand why she was having these challenges, and why she was receiving so much extra attention by special-ed staff, therapists, etc.

As for the talk, I felt like we did a decent job of explaining to her how her various strengths and challenges fit into the category of autism, and she received it well. She had heard about autism before, but said she had never thought that she might have it, which is understandable, because most general explanations or depictions or autism doesn't look like her exactly. We tried to explain that everyone's brain is unique and she has some strengths that other people don't have, and some challenges that other's don't have as well.

Once her attention span was exhausted, she just wanted us all to go and play a game together, so that's how the night ended. There will definitely be follow-up discussions and opportunities to see how she's processing this, but here is my issue:

I don't really feel like we did a great job of giving her a way that she could summarize what she just learned for herself and for others. For instance, I can imagine her sharing at school on Monday that she learned over the weekend that she's autistic. But if someone asked her what that means, I think she'd be at a loss to explain it. Our talk with her covered too much ground. It was too disorganized for her to be able to condense it down to a single nugget of "This is what I learned about myself today."

Does anyone have any ideas of ways to summarize that she could carry into the world and use to explain not only to herself, but to others, what makes her unique?

Also keeping in mind, I'm trying to avoid language that lends itself to a fixed mindset, so I'd like to avoid things language that suggests, "I'm good at X, I'm not good at Y."

Thanks for your help.



eikonabridge
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06 Apr 2019, 10:27 pm

(1) Good job talking to your daughter at her age. I talked to my daughter and my son when each one of them reached their 8th birthday. I wrote down a letter for each one of them. Every year afterwards, when they reached their new birthdays, I would re-read the letter together with them. Here is the letter I wrote for my son (many parts masked out, since I want it to remain a family letter.) I read it together with him on a train, on his 8th birthday, so to make the experience memorable. Take a look at this letter to borrow ideas on how you could talk to your daughter. Write down your own letter, so that you can be consistent with your message, year after year.

http://www.eikonabridge.com/Ivan_8th_birthday.pdf

(2) Perhaps you should take the view that there is absolutely nothing wrong with these children, and that there is something very wrong with our society. And I am referring to things like ADHD. It is not the problem of the children that teachers choose to apply "economy of scale" and wanting to educate all children one single way. Autistic children can perfectly learn and be developed, but they have a different way of learning. You raise autistic children by starting from their interests. Every single child with ADHD, also has something called "hyperfocus," which renders ADHD a misnomer. These children surely can focus, pay attention, and not be hyperactive, when they are doing things of their interest. Don't be brainwashed by the standard folklore out there. Don't ever look down on your own children. There is absolutely nothing wrong with them. Instead, we have tons of mentally-ill adults out there that refuse to learn skills and improve themselves, and that is the only problem with autism out there. Children are fine, adults (parents/teachers/doctors/psychologists/therapists) are the problem. They are ignorant, arrogant, and unable to learn. Don't believe me that adults are mentally ill? They can't even pick up a pen and draw stick figures! (They all could, when there were in kindergarten. But by the time they got into high school and became adults, they all managed to lose their creativity and along with that, the ability to draw, and the ability to learn.) And you can totally forget about teaching adults to make animation video clips (which children in elementary schools are making nowadays). That's how ill our society is: adults can't pick up skills of 8-year-olds.

(3) As for the emotional part, please drop the "regulation" idea. By using that term, it shows that you are looking at your daughter as something less than perfect. Her emotional expressions are sovereign expressions. What you want to do is instead to develop her brain, help her grow up. Teach her that "sometimes life is tough, sometimes life is fun." Connect her bad moments to her good moments and vice versa, and she will be able to mature and look at things from a higher plane. Get her a smartwatch with voice recording feature. Look at the second article below to learn how to use a voice recorder. A smartwatch makes things less conspicuous nowadays, beside, it is fashionable.

http://www.eikonabridge.com/fun_and_facts.pdf
http://www.eikonabridge.com/anxiety.pdf

- - -

Last weekend I took my children to a park. There were some acrobats, but also some religion-related stands. We stopped to buy a bottled water, when we heard 2 or 3 adults shouting at each other. One side was from pro-gay rights people, the other side was from homophobic fundamental Christians. At one point one guy shouted at another guy: "That's BS!" At that point my daughter just exploded, and yelled at the top of her lungs: "You guys should stop swearing, I am only a child!" Suddenly there were about one hundred eyes looking in our direction. I had two choices: either join the party and participate in the public shouting match, or walk my children away. At the end I decided to walk my children away, partly because I thought it could be too much for my son. As we were walking away, my daughter still kept shouting. A few moments later, I told my daughter: "Good practice!" and she was all smiles. I asked her: "After all that shouting, don't you feel very relaxed, now?" And she said, "Yeah, but my throat hurts." The thing is, I always tell my children: "Being loud is a skill." When we came home, she told what happened in the park to my wife, and was very proud about herself.

I've never discouraged my children from throwing tantrums. I always told them, the USA became an independent country and we enjoy freedom, justice and liberty today, because a whole bunch of people decided to throw a gigantic tantrum in the past. You can google and look it up: George Washington, Thomas Jefferson, Benjamin Franklin, all showed autistic traits. Being able to throw tantrums is part of basic human rights, everyone is entitled to it. Are you worried about children going out of control? Didn't I say everyone is entitled to throw tantrums? When it becomes my turn to throw tantrums, my children would quiet down very quickly, ha ha. Surprisingly, by having the freedom to throw tantrums whenever they wanted, my children grew up to be among the nicest kids out there, always polite and courteous. Just yesterday a teacher told me: "Your son is such a gentleman. There was a bench that was blocking my way, and he would stand up and move the bench away for me to walk through." People would never believe that we've never taught our son to be a gentleman, but that instead we've taught him to throw tantrums whenever he wanted!


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DW_a_mom
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08 Apr 2019, 7:05 pm

A common short cut is "your (my) brain works differently." "You (I) can do things I (you) can't, and I (you) can do things you (I) can't."


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11 Apr 2019, 2:17 pm

Rather than "can" and "can't" it may be better to emphasize easy and difficult.

In addition, areas of difficulty can be targeted as a focus point in which to concentrate the development of management skills. For example, if it is possible to identify a stress inducing situation prior to a melt down, asking permission to go to the bathroom might give her an option to buy time to discharge some accumulated anxiety.



jimmy m
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11 Apr 2019, 3:05 pm

Many Aspies experience a high degree of bullying in school. For boys this tends to peak in Junior High School. For girls this tends to peak in High School. This bullying can really impact the self esteem of a child. It maximizes stress which can then throw children into distress which produces behavioral problems. So one thing that I told my daughters when they are young and now my grandchildren was the following. "Some children can be mean. If this happens it is O.K. to defend yourself." Also I tell them to report this to me, not the teachers but to me. It is important for the parent to know this is happening. Many children will not tell there parents this is happening until it is too late. This is a difficult problem to solve. A parent may not be able to solve it because it is much more complex than what most people realize. [There is the code of silence. Bullies then to operate in packs. When an incident of bullying is reported, many times it is the Aspie child that is blamed. It is the "word of the one" vs the word of the many (bully and their gang) and the silence of the eye witness.] So even though a parent may not be able to solve the problem at least they should be aware that it is happening. So make sure you child knows that they should let you know.


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eikonabridge
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11 Apr 2019, 8:58 pm

jimmy m wrote:
Many Aspies experience a high degree of bullying in school. For boys this tends to peak in Junior High School. For girls this tends to peak in High School. ...

Sure, parents should try to know what happens to their children. But our school system is not designed for good sharing of information, due to privacy concerns. Sure, you can join in the small talk of some parents. But I find that creating more issues than solving issues.

I think children are more resilient that we give them credit for. Bullying has existed since forever. If autistic people still exist today, it's because they have managed to survive through bullying (statistically speaking), generation after generation. Mother Nature has designed us well enough, not only to survive, but to shine. Bullies are part of life. That's a given. Most children will find their own way to survive. Sure, I have been bullied, I have been punched in the stomach that has caused me permanent damage until today. But, hey, I am still alive and doing well. I don't think those bullies do well today. Some have been in jail, some have only been able to do low-wage hard manual labor. It's a jungle out there. You do whatever to survive. But guess what? After you go to college, you hang around with nicer people. After you go to grad school, you hang around with even nicer people. After you go to your PhD program, you hang around with even nicer people, many of them are ... also on the spectrum, just like you. So, why dwell on the bad years that will only last a blink of an eye? Bullies will not just bully you, they will bully other people, too. And more often than not, bullies get into troubles. That's the life they have chosen, and your life in the future will just never cross path with them again.

You see the same thing on this board. I've been called all sorts of names. Guess what? I have a happy family, my children are smart and happy, teachers go crazy about them. (... wait ... how many years have I been saying the same thing, now?) And those people that have bullied me? Where are they today? Huh? How are their kids doing, huh? I keep having fun with my children, and just found out that my son is synesthetic (of the associative number-form type) within these last two weeks. Life is fun.

This is what I tell my children: "... Sometimes life is tough, sometimes life is fun. If we remember that, we can carry through even the most difficult moments. You have to let go minor things, for your destiny is to rise up above the world!"


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magz
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12 Apr 2019, 3:14 am

There is a sweet book "All cats have Asperger's syndrome". It describes autistic traits comparing them to traits of cats - and has lots of sweet cat photos.
If my daughter gets officialy diagnosed, I'm going to give her a copy - not before because I prefer to avoid unconfirmed labels. She identifies as a cat anyway ^ω^

My way of explaining the traits is - some activities, like interacting with others or showing emotions, are so easy to most people, they don't even notice they do it. But these activities are tricky for me. Other activities, like complex and abstract logical thinking, are hard for most people but natural for me. Note that talents coming with autism may be different, for instance, I'm abstract pattern thinker, my daughter is visual thinker. In general, identifying one's strengths cannot be overvalued.

So I agree to previous posters that it's a lot about what is easy and what is hard for a particular person.


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DW_a_mom
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12 Apr 2019, 5:04 pm

timf wrote:
Rather than "can" and "can't" it may be better to emphasize easy and difficult.

In addition, areas of difficulty can be targeted as a focus point in which to concentrate the development of management skills. For example, if it is possible to identify a stress inducing situation prior to a melt down, asking permission to go to the bathroom might give her an option to buy time to discharge some accumulated anxiety.


You are right. Saying "easier" or "more difficult" is much better than "can" or "can't." I should have used those in the first place.


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12 Apr 2019, 5:16 pm

Instead of saying "can / can't" or "easier / more difficult", I would just describe differences.

For example:
"Many autistic children look away instead of making eye contact with their friends. They can learn to make eye contact but it doesn't usually feel natural".

"Many autistic children feel happier in quiet environments without lots of smells, noises or flashing lights".

"Sometimes autistic children enjoy repetitive actions such as __________________, just like you do".



eikonabridge
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12 Apr 2019, 11:47 pm

IsabellaLinton wrote:
"Many autistic children look away instead of making eye contact with their friends. They can learn to make eye contact but it doesn't usually feel natural".

"Many autistic children feel happier in quiet environments without lots of smells, noises or flashing lights".

"Sometimes autistic children enjoy repetitive actions such as __________________, just like you do".

All these sound like: "Many Chinese restaurants use MSG." (By the way, google and look up all recent research studies on MSG. Or just look up Wikipedia.)

The question is: what do you WANT to achieve with saying all those sentences?

It's bad enough that neurotypical people cannot understand autistic people and cannot view things from the autistic perspective. It's even worse when autistic people become brainwashed by neurotypical people's stereotypical observations.

What makes a stereotype? It's not that stereotypes are not true statistically, they often are. The awful thing about stereotyping is the negativity that comes with it. The undertone that it conveys.

The message: "Many Chinese restaurants use MSG" can be a fact. But the undertone is that MSG is bad for you. Why otherwise would anyone make such a comment?

People perhaps cannot understand what I am saying. What I am saying is: those comments about "Many autistic children ..." or "Sometimes autistic children ..." just never cross my mind as something I would tell my own children. I just don't see any relevance to their development. I don't see how all those observations do anything to children's development. Those comments just never pop up in my mind when I interact with my children. NEVER.

Those comments would only pop up in someone's mind when the person views all those manifestations as something negative.

It's a subtle point. But, when you bombard a little child with observations like those ones, from their young age, guess what happens next? They grow up with low self esteem, they acquire anxiety/depression problems, and some would go on to develop OCD. I mean, what do those comments really achieve, except in telling children that they are defective (which they are totally not)?

I am just surprised that so many autistic people look down on themselves. Not only that, they choose to propagate their psychological problems to their children. It's no wonder their children grow up with psychological issues.

There is a reason my children are always happy. I still remember once in a restaurant my son was bored and just moving around. Someone at a table nearby then told me: "You child is misbehaving." And I was startled. Startled because I have just realized that "misbehaving" has never been a part of my vocabulary in raising my children. It almost sounded like a foreign language. I understand perfectly that neurotypical children would misbehave, I see that all the time. But it is simply a foreign concept to the raising of autistic children.

People have to learn to accept that there are two worlds. My way of raising my children simply seems totally bizarre to most parents out there. For instance, I allow my children to throw tantrums anytime they want to, anywhere they want. Yet they are some of the most polite and courteous children out there. To the neurotypical world, they probably can't find an explanation why my approach works. But my kids are there for everyone to see. They are happy. It's just not me, my son's teachers often describe him as having an "ear-to-ear smile," all the time. It's even written on his IEP!

And by the way, my daughter just came by and sat next to me, and read this entire message. Ha. She asked to type something here.

- - -

Hi. This is the daughter that my dad was talking about. And, my dad is right. The messages that were listed at the top are really just trying to convey negativity. And, they can work against the children. Ok, that's all that I can really think of right now. I might type on another post if I get the chance.


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fez
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13 Apr 2019, 9:09 pm

My daughter found out at 8 when she was part of a assessment process initiated by me.

It was a great discovery which came after a year of needing information and it almost instantly transformed our lives. Shortly after she also figured out she had synesthesia - and i take her ability to identify this (not by name but by symptoms) as a sign she was ready to further understand and identify herself as having unique qualities compared to her peers.

She did tell one of her best friends she had synesthesia - after they both read ‘a mango shaped space’ but she has chosen to not tell her friends about autism. She is now 9.5 years old.

She mostly thinks very positively about autism and her sister and her nearly always play teachers where she is the special educational needs coordinator and sets up school for toys, dolls etc with learning differences. She also makes books and videos about being an aspie. I hope with time her confidence will grow and she will share with more people but i put no pressure on this as i don’t share myself... i figure at this point the most important thing is positively internalising and understanding herself and being able to speak about any needs and vocalise herself to teachers etc and she does this beautifully. She uses putty at school and a wobbly cushion and is allowed to doodle in a doodle book during lessons. Other kids asked her why she is allowed to do this but she just kind of evades questioning and gets on with it. She is not embarrassed about it and knows it helps her enormously. She is also extremely creative and artistic and hones these skills by constantly doodling and creating alongside her regular classes!

Since we found out for sure she has gone from being mostly average in terms of achivement to being at the top end of most of her subjects, so i think academically she has really started to figure out how she works best.

Interestingly i have found the same. I have a phd from before i knew i had autism and have just completed another masters in a different subject and it is very interesting to me how i have honed my understanding of how i work best. Just letting go of any understanding of how things are meant to work and going with what works for me has been groundbreaking in terms of my efficiency and the quality of my work.


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eikonabridge
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21 Apr 2019, 1:37 am

fez wrote:
She did tell one of her best friends she had synesthesia - after they both read ‘a mango shaped space’ but she has chosen to not tell her friends about autism.

Thanks. I'll have to check out that book.

By the way, synesthesia also lends support to the view that autism is "renormalization." That is, the unit of interaction being a cluster of neurons instead of a single neuron. https://wrongplanet.net/forums/viewtopic.php?t=368385


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22 May 2019, 3:50 pm

Magz,

A friend of gave me a copy of "All Cats Have Asperger Syndrome" to read. It is indeed a sweet book with cute photos, and very accurate in describing Asperger's in a fun way that kids can understand and cat lovers of all ages will appreciate.