Can anyone else with Autism talk to me about it?

I want other people here who also have Autism to explain to me how it helps and hinders them as an adult

Do you need any external support? Is it easy to access?

2 Likes

For me it hinders in terms of practical daily living skills. See Investigating the factors underlying adaptive functioning in autism in the EUā€AIMS Longitudinal European Autism Project

I get quite a lot of support for that from my stepdaughter, and to a lesser extent my granddaughters. I did get support from a care agency,but it was cheaper to hire an individual while at the same time paying her more than sheā€™d previously got working for a care agency. The fact she was also cleaning at a school where thereā€™d been a Covid outbreak meant I had to stop using her.

There is very little professional support in this county for autistic adults.

Socially it affects me a lot . While I have excellent verbal intelligence my social communication level was rated 3( classical autism level) when I was being assessed. Iā€™ve had very few friends in 64 years.

Iā€™ve never had a paid job . I donā€™t drive.

As well as the ASD & schizophrenia/schizoaffective . Thereā€™s clumsiness & odd gait,poor hand-eye coordination,poor manual/technical skills, being prone to dehydration due to poor interoception, also due to interoception difficulty knowing that Iā€™m full up after eating,chronic constipation, sleep problems stretching back to when I was a baby(initial insomnia), migraines, mild photo sensitivity, poor handwriting,astigmatism, poor spatial awareness,peripheral vision problems,poor sense of direction.

3 Likes

Autism is complicated. @anon4362788 is very knowledgeable about it.

2 Likes

My niece has autism and she doesnā€™t say more than a few words. ā€œYesā€, ā€œNoā€ā€¦when she wants something to eat she will say the name of what she wantsā€¦ā€œpizza rollsā€, ā€œbananasā€ā€¦Other than that and a few other words she wonā€™t talk. She talks in gibberish sometimes though. you are a much higher functioning autistic than she is.

1 Like

You shouldnā€™t really be comparing two people with autism to each other. Itā€™s a vast collection of characteristics, and impossible to measure people against each other.

Obviously not being that verbal is a huge issue, and I am not belittling that, but you know nothing about what I have been through to where I am now.

Appreciate if you took your sentiments to another thread please.

4 Likes

Didnā€™t realize I typed anything that offensive, but Iā€™m happy to leave.

1 Like

Mr. Star is autistic. His main struggles are in social settings, particularly at work. He gets into trouble because he doesnā€™t understand the office politics. He also does his job exactly as it is written, without pausing to consider external factors that might affect how things are done on a certain day. For example, if he had something on his list that would require 3 people to finish after he did his part, he might not stop to see if there were 3 people on shift thay day to finish up. He would just do his part and move on.

In his personal life he gets frustrated sometimes because he keeps finding himself distanced from friends, and he isnā€™t sure why they stop talking to him. He has really only had one friend stick by him for the past 8 years, everyone else seems to move on after a while.

He is great at coming up with creative solutions to problems, and at refusing to give up when his first 5 or 6 attempts donā€™t work. He is awesome at household chores.

3 Likes

Iā€™m just very knowledgeable about my daughter and her experience. Sheā€™s also developmentally disabled, so my experience is colored by that.

2 Likes

I once read an article about how a gluten free diet helps people with autism in many ways

1 Like

There are a lot of things about autism that make living in this world a little harder, but the hallmark for me would be the communication part. People with autism are missing out on a whole level of communication that neurotypical people are constantly engaged in. Itā€™s kind of like a dance that NTā€™s do, and they intuitively know the steps. Itā€™s how people are able to work together to get something done, keep the peace or just feel connected. I canā€™t do that dance. Even if I learn the steps itā€™s like dancing with someone elseā€™s feet. So basically I spend a lot of time on the sidelines trying to figure out what the hell it is Iā€™m supposed to do or say, all while trying not to draw attention to my cluelessness.

1 Like

Ugh, it really doesnā€™t. This is a myth popularized by a false study that has since been retracted. Unfortunately, a lot of parents buy into this myth. It is all observer bias. Parents expect their kids to act better on a gluten free diet,so they notice their positive behaviors more.

3 Likes

image

4 Likes

Thereā€™s some speculation about diet changes since a great many (anecdotal) kids on the spectrum have gut problems. A diet that helps relieve pain and discomfort shows positive behaviors and overall improvement.

Some kids benefit from removal of dairy. I know for a fact it helped my daughter and improved her gut issues which may have led to her talking. It could be a coincidence, of course.

She would only say a word here and there. After eliminating military within 2 weeks she was talking in full sentences, but had improved gut health first.

Itā€™s thought (by some) that being sick, in pain, and just feeling gross from the gut problems (itā€™s a lot like IBS symptoms and lactose intolerant symptoms) makes kids act out and can cause delay in development.

Again, this is all anecdotal.

2 Likes

It would make sense that if a kid is lactose intolerant, a dairy free diet would help, because then they wouldnā€™t have the sensory discomfort of eating something they canā€™t digest interfering with all their signals. Same with gluten. But as far as I know, the only study that linked autism and intestinal inflamation was the wakefield study.

1 Like

I have a lot of your stated problems @firemonkey and Iā€™m not even autistic. (I took the test).

1 Like

Iā€™ve not had gut problems, but do know it can occur significantly more often with autistic people. A problem I do have is chronic constipation.

1 Like

I always looked at it as a way to help reduce discomfort and help the tummy. Positive behavior was just a nice side effect. Comfortable kid- happy kid.

2 Likes

Iā€™m detecting a negative response to one of my replies,so Iā€™m withdrawing from this thread.

2 Likes

Wel Iā€™m a social butterfly and will talk to anyone about anything. This is good and bad. I overshare. I get taken advantage of. Iā€™m a bit awkward though not as bad as i used to be. Iā€™m very verbal most of the time. I shut down in sensory overloads. But I wear ear plugs to help this. People tend to like me but not as much as I like them I think.

1 Like

I might just be biased because so many of my students were on gluten/casein free diets by order of their parents, but it was very obvious the diets were not being followed at home so the kids would just get furious that they were suddenly not allowed to eat their favorite foods at school, which def led to more behaviors.

2 Likes