What is it like to live with LFA every day?

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("LFA" = Low Functioning Autism)

i heard some people with LFA cannot speak or have extreme dficulty doing it. also not all of them are in wheelcheirs some lfa autistics use them becuse of other medical conditions like cerbreal palsy

Do you mean what it is like from the perspective of someone with LFA? You can find some books about that which could be interesting for you then, such as 'Autism and the Myth of the Person Alone' by Douglas Biklen which includes the opinions of people such as Tito Mukhopadhyay who was diagnosed with low-functioning autism as a child and can't communicate verbally.

kingdomofrats (sorry, don't remember how to spell her username) was a user here with LFA. You can search her name here and read her posts. EzraS is also a user here with LFA.

Yes, where is Kingdomofrats? I can´t find any writings from he, that are dated after Nov. 2014.

there was this user named nintendofan who is mod. low-functioning autistic and really loves mario. he left because he was sick of being bulling by mean bully people on WP

If a person uses a wheelchair, it is never because of autism. Autism doesn't affect one's ability to walk, so there would have to be something else going on.

There are some really interesting self-reports around from people who are non-verbal or otherwise need significant daily help. Some of them are very smart, although they have a hard time expressing that. Some people have significant intellectual impairment, which means that they aren't very smart. This is a really fun population to work with actually, if you are into service work as a career.

Generally people with LFA don't like to be called that, for obvious reasons, as its kind of insulting. But its true that some people need a lot of support to live, or to live well.

Most of these folks either live with their parents, or they live in a group home run by a state agency or similar. They do every thing that everyone else does - cooking, cleaning, bathiing, going to work, etc... The difference is that they need guidance from a helper or they get lost and tend to melt down really quickly. And they tend to take a lot longer on each task, in my experience. They tend to REALLY enjoy doing the same thing everyday. We do too, but its like my own enjoying the same TV shows times ten. I know people who have had the same ten barney videos on a loop for 30 years, and they really are not into watching other things. Some NTs really want for people who use services to have "age appropriate" entertainment choices. But I don't see the point. If the person likes it, why can't they do what ever they like, even if its something more often enjoyed by toddlers? Its not hurting anyone.

From talking to these people, I think their inner worlds are pretty similar to everyone elses. No everyone contemplates Shakespear. But everyone wants to be loved and to feel like they belong. Everyone with any kind of autism gets overwhelmed sometimes. There might be a little bit more fear in this population - their need for rigid regularity is probably stronger than most people on wrong planet. But its the same need that we have.

It depends upon the person with LFA.

Some are really unhappy people who abuse themselves every day. They have to wear helmets. They have to take quite a bit of medication. And they are usually treated roughly by their caretakers--sometimes by necessity, sometimes because of the frustration of both the caretakers and the autistic person.

There are others who are happier. They are in "their own world." They jump up and down and stim happily. They don't initiate contact with any other person. They can meet their basic needs--toileting, dressing, eating--and their speech, if present, is related to their basic needs and their fulfillment. Like a previous poster stated, they might like to watch the same Barney video every day. If their routine is, in any way tampered with, they melt down quite easily. They don't need helmets, though. And they don't self-harm. They might take medication.

That's often the reality. At the same time, we need to be about bringing about a better reality.

Someone who's a big burly football player type or a woman who's a tall, sturdy basketball power forward type can both protect themselves and the autistic person without excessive force. Sometimes by blocking and holding a hand. Sometimes maybe by a bear hug. Although even that probably doesn't need to be used that often.

In the longterm, maybe we have to get past the idea that caretaking has to be a regular 8 to 10 hour "job." Instead more like the length of an athletic competition. A three hour shift where the caretaker is paid damn well for that shift.

And I'll leave if to someone else to talk about what my be best practices regarding medication.

as far as persons being bullied right here at WrongPlanet, wow, that's where we just need to develop some middle-of-the-road skills. And try to intervene in a moderate way.

For example, maybe say, ____ [name], I think I see where you're coming from. {paraphrase view, and the person feels good]

so, instead of 3 attackers and 0 developers, the person has 1 or 2 defenders. It does make a difference.

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and if not that, another skill. We develop a couple of different skills and then we're not so powerless and unsure what to do when we see this happening.

Some things wont' work. That's okay

I'm not LFA, just moderate with severe dyspraxia. I don't have intellectual disability, but I do have cognitive impairments.

Anyways, I think I'm bad off enough to relate to those with LFA and have been in school with LFA students.

For me, dependency is a big issue. I'm basically like a small child in that regard. I'm never to be left unattended and need to be tended to.

Then there is the basic inability to communicate and interact in real life. So like at a family gathering, I am basically off in a corner isolated, only able to observe what is going on rather than actually partisapate.

I am sometimes in a wheelchair in big public places. I'm basically in a wheelchair for the same reason a little kid is in a stroller. I have trouble keeping up, I get lost easily and stuff like that.

I agree, sadly in the UK most care workers get minimum wage which is now £7.20 for adults over 25. Even people dealing with complex and challenging behaviours don't seem to get much more than this (if any more). I was working in a residential home for people with very challenging behaviour who would attack others on a regular basis and would often need restraining. I only got around 50p more an hour than minimum wage doing that. Staff were injured and had bones broken at times and didn't get anything more than statutory sick pay for time off as a result without having to sue the individual or employer.

Lots of private care companies are making a lot of money out of these vulnerable people. It's about savings rather than quality of care. Charities aren't much better as funding is a big difficulty.

Many staff work between 12 and 16 hour days and some are forced to do 24 hour shifts and sometimes even longer, all without any breaks, if staff do not turn up to take over the shift as it's illegal and unethical to leave.

I think the whole system needs changing dramatically but not sure how it's going to happen because of money.

I've worked with a few people with autism who can walk but are made to use wheelchairs because they tend to wander off or walk in a totally random direction. Not sure how ethical this is but in some cases it does seem at least practical if not completely necessary.

They are great people to work with but sadly you also have to deal with the other NT staff and management nonsense

In the UK now many people with autism and learning disabilities live in supported living accommodation and even very low functioning people often live in their own home or share with a few others, but in a more homely environment rather than an institution or 'care home' which is really good. Their support tends to be a lot more person centred for example they eat what and when they want rather than at a set time.

That is the case with myself and others I know of. Personally I prefer it in big public places. Especially a place like Disneyland. It makes me feel so much safer in such a crowded place. Plus uh, gets me on the rides a lot faster hehe.

I used to have a friend who had LFA. He was like a brother to me, but shortly after I turned 18, my mom {of all people} forced me to never see him again because she thought he was gay.

Oh wow, that is really harsh

Good to hear you like it rather than finding it restrictive