Things misunderstood about autism

This was an answer I gave on Quora

It's much easier for people to understand a disability like blindness or being in a wheelchair. There often isn't anything visible with an Aspie.

My Aspie kids didn't get the same kind of sympathy. They're bright. They learn easily what other kids struggle to learn, but they don't understand basic social situations that are easy for other kids to understand. Other kids and parents are jealous.

So often I'd get "He's a bright boy. He'll figure it out." Well now he's 27 and he still hasn't, despite genius IQ. IQ and EQ aren't the same. People don't get that.

What follows is a sort of a stream of consciousness of what it was like when the older one, who has the worse Aspergers, was little — things I was often thinking:

"No I can't get him to comply with instructions. No I'm not making him wear girl's clothes. That's his idea. No it's not safe to walk with him as a toddler without a harness. No he won't hold my hand.

"Their kids are docile. They don't understand the concept of a kid who is totally different.

"Parents run the other way when they see me coming, because they don't want to have to deal with me and my kids."

Positivity and cancer treatment

 This was one of my more popular posts on Quora.

The question was whether the brain is your best weapon against cancer. This was my answer.

I'm a cancer survivor.

One of my biggest bugaboos is people who insist that a positive attitude can treat cancer. Blaming cancer victims for their cancer, because of their allegedly poor attitude, is cruel and superstitious.

My experience is that cancer causes depression, even if you don't consciously know you have it. I saw this in my father as well. Subliminally, you know something is wrong.

If the treatment works, you become less depressed. People think that means that the less depressed people are somehow curing their own cancer. That's mixing up cause and effect.

I've been watching a friend trying to cure his mother's cancer with positive attitude. It's not working. He's keeping her positive, and she's dying anyway.

Difficulties faced by adults with autism

This was a response I wrote on Quora about difficulties faced by adults with autism

I am told that neurotypicals are constantly engaging in subliminal interchange of small movements of the muscles around the eyes. When they are with others, exchanging these movements, it’s a kind of telepathy. They know what others are feeling all the time. They feel part of the group.

People with Aspergers are missing that. We can’t do it. That’s a big part of our disability.

Even when I’m with others, I feel alone. I don’t feel connected. I want to feel connected the way neurotypicals do. I can’t.

Also, I have auditory sensitivities and other sensory integration problems. I can’t be in a crowded, noisy bar. I can’t be surrounded by large screen TVs with sports images. I can’t go in there. I have to leave. I miss out on social groups.

In group conversations, I cannot participate. I don’t know when it’s my turn. It’s like when I was a child and kids would jump rope “double Dutch,” in other words there were two ropes at once. I just didn’t feel like I could even attempt that.

Even in a one-on-one conversation, often the speaker changes subjects faster than I can respond to a single topic. Listening to such a speaker just feels like being electrocuted. I sit there, paralyzed, and can’t say anything.

I also often don’t know my feelings until several days later. I can’t explain in a timely fashion what is going on with me.

I’m not sure if this is Asperger’s or not, but I find that a lot of people start issuing me instructions. I say something and they give me instructions about how to do it. I just want them to listen and be my friend. I don’t want a bunch of random people issuing me instructions. I’m already busy enough without being sent hither and yon with new missions. This might be a problem for neurotypicals as well.

I want to have friends. I want to have emotional intimacy. It doesn’t work.

Things I liked about a home birth

This was an answer to a question on Quora about the first night with my baby

My first baby was born at home, with a certified nurse midwife and obstetrical nurse in attendance.

I'm really glad I went this route. Delivery was easier in my home.

I was allowed to deliver in a standing position so that gravity helped me more. The midwife, unlike a doctor, was willing to sit on the floor behind me and catch the baby.

I was more comfortable at home. There weren't bright lights, IV, fetal monitors, or strangers coming in and out.

I also was allowed to do my pushing stage of labor in the shower, which was more comfortable and the warm water in the shower simulated my body to release oxytocin naturally. Artificial pitocin increases pain and complications in labor.

Despite the fact that science shows that episiotomies increase tearing, a lot of doctors still do them. The midwife didn't.

Also, the midwife supported me in my desire not to have pain relieving drugs, by reminding me when I was in transition that I could do this with the right attitude.

I really feel this midwife saved me from an unnecessary cesarean.

Also I was allowed to sleep in bed with the baby right away. This created a more intense bond.

Nursing pointers

This was the question presented on Quora

What's something about nursing a newborn that they don't teach you while you're at the hospital?

 

This is the answer I wanted to memorialize, because I can never find my answers again on Quora

I had one baby at home and one at a birthing center. I don’t know what they tell you at hospitals. I did have a good lactation consultant from La Leche League who was super helpful. I nursed by first child until he was 22 months old and my second until he was 36 months old.

Some pointers:

Hold the baby like a guitar, tummy firmly planted against your tummy.

Try to be relaxed. If you’re having trouble letting down the milk, go into a warm shower, naked, with the baby. The warm water will help you let the milk down.

I found that I couldn’t speak to other people while nursing. It was too distracting. I needed to be in a kind of spaced out, meditative state.

Lactation is supply and demand. The more the baby nurses, the more milk you will have. If you start supplementing with formula, your supply with decrease. Just let the baby nurse more.

I agree with the comments below about nursing on demand, not according to a schedule.

Nursing releases endorphins. You may feel high. Some women have orgasm while nursing. Don’t feel ashamed of that.

Don’t feed the baby a bottle yourself. That will give the baby nipple confusion. The baby should only get a bottle when you’re not around. Nipple confusion can result in biting, inter alia, and poor nursing skills on the part of the baby.

The baby has a growth spurt around 3 months and then again around 6 months. The baby will have to nurse more frequently at this time, to get your milk supply to increase.  This doesn't mean you should switch to formula.

Co-sleeping is really helpful. I recommend the book “Nighttime Parenting” by Dr. Sears. A sober mom will *not* roll over on her baby. That’s only moms who are drunk or on drugs.

If you’re going to be expressing milk at work, be sure to get a good pump with good seal on your breasts and good suction. You can rent a hospital grade pump. Be assertive about asking for work accommodations for pumping.

Express and extra 2 oz every morning and freeze, it so you have backup. Be sure and express the same amount every day, to avoid infection. I found pint freezer bags to be the best thing for storing expressed milk in the freezer.

Be sure, when you express milk, that the caregiver at home feeds the baby the same amount you expressed.

Don’t wash your nipple area with soap, to avoid chapping, and to avoid feeding the baby chemicals. Just rinse there

Dripping is good, because it tells your breasts that they’re making too much milk and need to reduce. 

Don’t try to stop the dripping. 

Bras tend to stop the dripping. I found that they increased my risk of infection. I’ve had an aversion to bras ever since. There’s been research in France that bras actually undermine your pectoral muscles and increase sagging, contrary to popular belief.

Don’t try to out of the house within the first six weeks of childbirth, if you can avoid it. That’s how I got infections, too, over exerting myself.

Is autism a personality trait?

This was the question presented on Quora

Can some autistic Spectrum disorder equally be described as psychological traits/preferences which don’t match what other people prefer. For example, an extreme ISTP or an extreme inclination to the Conscientiousness trait?

My answer

I don’t think so.

The psychiatrist who diagnosed my son told me that we are supposed to be born with an invisible antenna that allows us to perceive and interpret social signals, e.g. facial expressions (especially movement of the small muscles around the eyes), tones of voice, and gestures, and give those signals meaning. This mechanism is an instinct, not learned. The NT child begins perceiving these non-verbal signals from birth, and already starts to have a fairly complex idea of the way people work.

The autistic child is lacking this antenna, and therefore is not getting the non-verbal signals, which are 90% of speech. The psychiatrist told us that, at 4 years old, our son still had an infantile view of people, i.e. that people existed only to serve him, e.g. “mom brings me milk.” He was not able to conceptualize that other people had feelings or that his actions could affect these feelings.

By contrast the NT child would start noticing Mom smiling back when he smiles within a few months of birth, ditto with Mom looking concerned when he cries.

NT children draw their security from referencing their care giver’s face. If the caregiver’s face is calm, they feel calm. If the caregiver’s face is upset, they get upset — and so forth.

The autistic child cannot do this. Therefore the autistic child draws security and comfort from rigid routines and systems. This becomes a preference, because of the disability. It’s not a preference the way an NT would develop a preference.

Also, autistic people are not true natural introverts. They may seem like introverts because they don’t make eye contact, and tend to give up on social interactions, because people react poorly to them. However, they are not true introverts.

My son was quite extroverted as a child. This made him get in trouble much more than an introverted autistic child would, because his behavior was more noticeably socially inappropriate.

My son has become something of a homebody, now, because persistent negative reactions to him have given him social anxiety, but he is not a natural introvert

See also

http://annalisse-mayer.blogspot.com/2019/08/on-quora-i-keep-getting-asked-about.html