Autism support?

[LittleRobbie]

There are a lot of autistic people within the adisc community.
Having been recently diagnosed I'm still learning what it means to be austic, and where to get support.

Are you autistic, and what does it mean to you?
What support do you receive?
Are there any online support communities?

 

[Deleted member 79338]

Being autistic does not mean you have an illness or disease. It means your brain works in a different way from other people.

It's something you're born with. Signs of autism might be noticed when you're very young, or not until you're older.


If you're autistic, you're autistic your whole life.

Autism is not a medical condition with treatments or a "cure". But some people need support to help them with certain things.

I find the things very difficult for me
Listed below:

• Here are some of my difficulties I deal with daily as being Autistic.
• find it hard to understand how other people think or feel
• find things like bright lights or loud noises overwhelming, stressful or uncomfortable
• get anxious or upset about unfamiliar situations and social events
• take longer to understand information
• do or think the same things over and over

 

[Wonderingabout]

Never had a reason to be tested that I know of. That is until very very recently. My wife is learning that some of the things she experiences are unique to her. One of her triggers is sound. It's been a learning experience for both of us. She wants to pursue a diagnosis, but it's not feasible currently with our finances.

 

[LittleRobbie]

Being autistic does not mean you have an illness or disease. It means your brain works in a different way from other people.

It's something you're born with. Signs of autism might be noticed when you're very young, or not until you're older.


If you're autistic, you're autistic your whole life.

Autism is not a medical condition with treatments or a "cure". But some people need support to help them with certain things.

I find the things very difficult for me
Listed below:

• Here are some of my difficulties I deal with daily as being Autistic.
• find it hard to understand how other people think or feel
• find things like bright lights or loud noises overwhelming, stressful or uncomfortable
• get anxious or upset about unfamiliar situations and social events
• take longer to understand information
• do or think the same things over and over

I myself have;

• find it hard to understand how other people think or feel
• find things like bright lights or loud noises overwhelming, stressful or uncomfortable
• get anxious or upset about unfamiliar situations and social events
• take longer to understand information
• do or think the same things over and over
• Forget basic things like, getting dressed before leaving the house
• Put myself into dangerous situation without knowing it
• Not know how to word the things I want to say
• Have no idea where to get the support I need

Never had a reason to be tested that I know of. That is until very very recently. My wife is learning that some of the things she experiences are unique to her. One of her triggers is sound. It's been a learning experience for both of us. She wants to pursue a diagnosis, but it's not feasible currently with our finances.

NHS in the UK is a wonderful thing, we all complain about it, but it's free when we need professional medical help and we really shouldn't complain about it!

 

[BBBen]

As i vote - iam non autistic. But you doing a good think with the info about autistic. It helps to understand and to take care.
And being autistic didnt say, you couldnt have a "normal" life.

 

[AJFan2020]

I selected the first option. I was actually diagnosed twice.

The first time I was diagnosed was at a neurologist’s office shortly after my two-year checkup.

The second time I was diagnosed was at another visit with a neurologist (technically a neuropsychologist) when I was nineteen-and-a-half years old.

For me being autistic means a combination of having difficulty with eye contact, body language, and in-person social interactions. I find it easier to talk on the phone with people and send text messages. On the plus side I have an easier time than most people focusing on something if it interests me. This has allowed me to pass some IT exams without any formal training in IT.

At the moment I do not receive (or need) any autism support and I don’t use any autism support websites. I may eventually use such websites if needed in the event that I happen to find any good ones.

 

[BobbiSueEllen]

Well, you wear diapers...and so do we, and many of us have autism. I'd say you've got pretty good support right here.

"'Oddism' and diapers. Arriiiiight..."

I just wish these so-called 'autism experts' would listen to us older folks with it, get a grasp on the Bigger Picture.

 

[VeiledDevotee]

There are a lot of autistic people within the adisc community.
Having been recently diagnosed I'm still learning what it means to be austic, and where to get support.

Are you autistic, and what does it mean to you?
What support do you receive?
Are there any online support communities?

1st point:

Yes, I am autistic (level 1). I must have been diagnosed around the age of 5 or 6.​

What it means to me now is different from what it used to be back when i was a child.​

​

When i was a child it ment deficiencies in speech, reading, writing or anger outburst when things did not go like what i believed to be the "correct" way to do things and needed a lot of order/structure. Social situations where a big hassle, eye contact almost non existent.​

​

Today it means that i can mask my way out of a social situations. That i have to adept to unforeseen circumstances and give myself a minute to accept it. It means that picking up the phone or making a call is a big barrier for me, even though it should be easy now. And managing time and upcoming events is often necessary for me in order to function well (i still fail in this aspect a lot). There may be plenty of things i left out but this should give you the idea.​

2nd point:

Again, as a child it meant having to go to a rehabilitation center 2 times a week. Supports like having to go to a pedagogue almost every day. Having to change schools to a autism/adhd specific school. And my parents creating structure in the household.​

​

Today assume nor ask for support. But my parents do still help me with overwhelming tasks like doing renovations: finding contractors and contact them. So in general. not much support needed. That said, i do still get a bus subscription for €1 a year to go anywhere (never asked for this either).​

​

3th point:

I have been in some autistic communities online. But left each one respectively. The people that do a great job in running the community often get burned out. When there is a transition in ownership, the community starts to wither. (this is a personal experience, so take it with a grain of salt)​

​

As for helpful tips and tricks. Just Try to create structure in you life. There are plenty of things you cant control. So focus on the things you can control.​

 

[KitsuneFox]

I grew up in the "stone age" when Autism wasn't widely understood. I was diagnosed as "ADD" as a child, and "ADHD" in my pre-teen years.
Unfortunately, my foster-family believed that if they beat the stuffing out of me enough, I would behave 'normally' x_x
At the time, there was no real help for children with autism. As an adult right now, there still isn't any ( realistic ) help unless I am willing to spend a boatload of money on certified & licensed psychological experts.

 

[LittleRobbie]

I grew up in the "stone age" when Autism wasn't widely understood. I was diagnosed as "ADD" as a child, and "ADHD" in my pre-teen years.
Unfortunately, my foster-family believed that if they beat the stuffing out of me enough, I would behave 'normally' x_x
At the time, there was no real help for children with autism. As an adult right now, there still isn't any ( realistic ) help unless I am willing to spend a boatload of money on certified & licensed psychological experts.

Yea, there was no help available for children with autism and adhd etc. Back in the day, we were just "naughty" children and punished a lot. Thankfully it's now more known and help is available for them, but as you say @KitsuneFox not so much for adults. Seems like our generation missed out on receiving the help needed, but thankfully we all have each other for support!

 

[KBoy]

I grew up in the "stone age" when Autism wasn't widely understood. I was diagnosed as "ADD" as a child, and "ADHD" in my pre-teen years.
Unfortunately, my foster-family believed that if they beat the stuffing out of me enough, I would behave 'normally' x_x
At the time, there was no real help for children with autism. As an adult right now, there still isn't any ( realistic ) help unless I am willing to spend a boatload of money on certified & licensed psychological experts.

I'm sorry that happened to you.
Mental illness is about the same, probably a little worse in the US . Very little resources that agree with each other lol.
i completely understand that autism is not mental illness, it is a developmental condition, i believe, please correct me if i am wrong.
i have borderline personality disorder, very misunderstood and i even share some of the traits currently associated with autism.
ADISC should be completely autism freindly, i know that i am

 

[LittleRobbie]

I'm sorry that happened to you.
Mental illness is about the same, probably a little worse in the US . Very little resources that agree with each other lol.
i completely understand that autism is not mental illness, it is a developmental condition, i believe, please correct me if i am wrong.
i have borderline personality disorder, very misunderstood and i even share some of the traits currently associated with autism.
ADISC should be completely autism freindly, i know that i am

ADISC most definitely is autism friendly. I've spoken to many people on here with autism and/or ADHD, all been really friendly and helpful.

Your right @KBoy, it's a developmental condition. Calling autism, ADHD, and AD a disability can be really offensive to some of us ( I'm not saying you did), just putting it out there for people to know.

 

[LittleDiaperDreamer]

Well, I don't know in which case I fall : I was diagnosed with an abnormal high IQ as a child (I hate to say it, because it really makes me feel like I want to brag, but honestly it wasn't all that great) and with significant autistic traits, like one can say I'm "on the border" but I'm not officially autistic. Which is good I guess, but I still have some "particularities" or struggles that were absolutely not dealt with, as again, I'm not per se autistic.
I basically found solutions by myself and my parents did as if I was completely normal, which is okay but they weren't very understanding when I had problems in my life, they low key blamed me / made me feel bad for it even though I really think that it was related to my almost diagnosis.
It's like it is a significant part of me, I know it's there and I can deal with it most of the times but some days it's just too much, and what's interesting is diapers do help me a lot with that, as it makes me forget everything for a bit, and it makes me feel loved, cared for and safe

 

[BobbiSueEllen]

Yea, there was no help available for children with autism and adhd etc. Back in the day, we were just "naughty" children and punished a lot. Thankfully it's now more known and help is available for them, but as you say @KitsuneFox not so much for adults. Seems like our generation missed out on receiving the help needed, but thankfully we all have each other for support!

Oh, I know that all too well!

 

[Edgewater]

Autism exists genetically within my family, with both my grandparent's families and seems to jump about within generations with fewer individuals effected in some generations and more common in others. Of the three children of my parents, my middle brother was effect, but my youngest and the oldest (me) were not affected. My middle brother married and his wife was Autistic. Both of their children and grandkids were affected. Whereas my younger brother and my children and grandkids have not.

The point is, Autism is something that I am aware of and sensitive about. The science is helpful, but sadly trails.

My heart is with each of you!

 

[caitianx]

Being autistic does not mean you have an illness or disease. It means your brain works in a different way from other people.

It's something you're born with. Signs of autism might be noticed when you're very young, or not until you're older.


If you're autistic, you're autistic your whole life.

Autism is not a medical condition with treatments or a "cure". But some people need support to help them with certain things.

I find the things very difficult for me
Listed below:

• Here are some of my difficulties I deal with daily as being Autistic.
• find it hard to understand how other people think or feel
• find things like bright lights or loud noises overwhelming, stressful or uncomfortable
• get anxious or upset about unfamiliar situations and social events
• take longer to understand information
• do or think the same things over and over

This is me too as a 66 year old autistic diagnosed correctly by a Developmental Neurologist at age 47.

 

[caitianx]

I grew up in the "stone age" when Autism wasn't widely understood. I was diagnosed as "ADD" as a child, and "ADHD" in my pre-teen years.
Unfortunately, my foster-family believed that if they beat the stuffing out of me enough, I would behave 'normally' x_x
At the time, there was no real help for children with autism. As an adult right now, there still isn't any ( realistic ) help unless I am willing to spend a boatload of money on certified & licensed psychological experts.

I have had my own share of having the shit beaten out of me by my Mom to make me "normal".
That was the method her Mom, my Grandma "E" used on her to make her not be Autistic.
Mom's Dad's parents, used the same method of beating the Autism out of him too.
3 generations...

 

[sejones5lu]

Diagnosed with ADHD as a child, diagnosed with Asperger's as an adult. Got beat my father, and looking back when I was trying to suck on stuff as an elementary school age child, I was stimming. I got beat for that. Now I use a Nuk 18-36 months pacifier.

 

[KBoy]

ADISC most definitely is autism friendly. I've spoken to many people on here with autism and/or ADHD, all been really friendly and helpful.

Your right @KBoy, it's a developmental condition. Calling autism, ADHD, and AD a disability can be really offensive to some of us ( I'm not saying you did), just putting it out there for people to know.

Yes, I am aware that autism is not mental illness, my granddaughter is on the spectrum and does not have a mental illness, I on the other hand do. I go to the trouble to make the distinction during conversation because the stigma of mental illness is so extreme. I will defend my granddaughter against any claim that she mentally ill even though I myself am.
I have been high functioning through out my life. Wore a hat & had a job, pretty crazy. It has been hard. The good thing is that both autism and mental illness (like me) are better understood, and we are able to be seen out in public, outside of the south where I live, where Crazy has always been socially acceptable.

 

[Deleted member 79338]

I just don’t understand something. Anytime I am taken out into public places, I’m always changed and my Respite Care Provider has several extra diapers in my diaper bag. Just about every hour my diaper gets checked with the 3 finger swipe in in front and then the back of my diaper is pulled out to allow her to see if I have messed myself. 8 times out of 10 I always have at 2 diaper changes within an hour. I cannot believe how many diapers I go through on a daily basis. Even before bedtime I will have at 4 different diaper changes. Then when it’s time for bed I will get bathed and then it comes my OverNite Diaper. Every morning I’m always wet and messy. I always get a diaper change first thing in the morning. Sometimes I will remain in my Overnite Diaper even after having a bath. I wonder why I am put in my OverNite Diapers during the day? No idea!!!