Low Functioning Autism - Do you find people just don't get it?

[jess1975]

My ds is almost four with a communication age of around 12 months. He's at a severe learning difficulties school and will be until he's nineteen. He's low functioning and always will be on that end of the spectrum. However we will not stop until he reaches his full potential and he's a very happy little boy. He's progressing well and he's our absolute world. What I do find frustrating is that people seem to be only aware of hfa and gifted children. I'm continually told stories of children at mainstream with autism as if to say that my ds doesn't need to be at special school. They hear "autism" and think that all diagnosed autistic kids are the same. My mum was telling a member of our family about him and she was saying he had severe learning difficulties and the family member said "yes but all autistic kids do"! I just feel there needs to be more awareness for low functioning autism. Anyone else?

I think it goes both ways to be honest. I work in a special school, and have children ranging from extremely low functioning autism to those who are quite able, and we tend to find more acceptance of the existance of those who are lower functioning, than those who superficially appear more typical!

My own son has autism and is 'mid range' (for want of a better term.. special schooled but verbal, can read, but no where near typical kids his age..he's 16) and we find that people just don't get him at all and think he is creepy and weird:(

Very few people 'get' autism(or any other disability for that matter). My daughter is similar to yours. A friend whose son is non-verbal at 16, severely impaired scored genius on IQ tests in US. She told me till he was 10 they had no idea how much he understood. And since she told me that, I have stopped using low/high functioning as a term to describe kids on the spectrum.

Don't worry about people(easier said than done). I just plough on.

What annoys me most is that stares from the public. On 2nd I was in a tube in central london and my daughter started stimming on lights. My God, the stares. So much for autism awareness.

These kids are all very differnet. People think they are all Einsteins. Less than 10% are savants. Rest have many many learning difficulties - mild to severe.

Hugs

Hi I do agree with you my dd2 isn't as severe as yours but she attends a special school for children with autism and she is four . She is verbal but functions at the level of a two year and has severe meltdowns . Tbh I've stopped reading some threads about autism as dd 2 doesn't have a special interest or advanced speech she was diagnosed at two . I would describe her as having moderate autism and moderate learning difgiculties

Medusa your don sounds where I imagine dd2 is

Hi - Thanks for all taking the time to reply and your kind words. It's so difficult sometimes especially when well meaning people tell you about Tom down the road who also has autism and is now at mainstream and completely cured! I just think they hear autism and think everyone is the same. I realise all children with autism have huge difficulties to overcome but when you have a child who's functioning at 12 months old surely there needs to be a different term for their diagnosis. After all very few people know what low functioning autism even is. Hope I haven't offended anyone.

No Jess far from being offensive you I have a very good point I also have a ds with high functioning autism and the difference between him and my dd at the same age is huge

I'm really pleased you've posted this! It brings awareness to the fact that no matter where your child is on the spectrum that people never seem to get it! My son has aspergers, and gets constant dispute from teachers that there is anything at all different. I won't list it all here but there are masses of things and now in year 3 school finally agree to go for help! Chin up.

I find I change my language depending upon circumstances. If I need a person to understand that my child has specific difficulties I tend to use severe learning difficulties. This leaves the person under no doubt he is not like the boy down the road who is excellent with maths. I do think that the range of difficulties and the crossover leaves everyone on the spectrum not total understood.

It also gets easier from about the age of seven, that was when people stopped asking "is he talking yet", or "there's plenty of time" and "Einstein didn't talk till he was four". There was probably more but time has thankfully wiped them away.

Cobain I've been asked why dd2 is at a special school it's often assumed that all asd can be dealt with in mainstream . I know this was touched on above but do more people have low or high functioning autism?

I think unless people are involved with people with disabilities on a regular basis they tend to assume everyone with a particular condition is the same as whatever limited exposure/tv programme/article etc that they have read.
My DS2 has Cerebral palsy and autism. Some people are confused and imagine a wheelchair bound rain man, very different from the walking child with learning difficulties that they meet. its just that their reference point is limited.
Like all people, children with autism are unique and its only by education that peoples knowledge and attitude is going to change.

Polter I think your idea of descriptors is excellent as many people have autism with ADHD , dyslexia learning difficulties and hearing and visual impairments amoungst many other things

I agree that the vast majority of people dont understand ASD/Autism/Aspergers, end of!

Sad but true

Jess my DS is 7. He's non verbal, autistic, deaf, in a sp Sch and has learning difficulties. He will be one of those kids who will live in a type of residential home when he is an adult as I doubt he will ever be able to live an independent life.

Interesting thread. I have been thinking recently that I'm going to stop saying "ds3's autistic" and start saying "ds3 has learning difficulties" because I'm not sure what people expect if I say autistic.

I just watched horizon and the fact that 50 percent of people with autism have a learning disability explains the fact I have one child with high functioning autism and one with autism and a learning disability

DH has Aspergers syndrome and his cousin has low functioning autism. There is a huge difference between them. My 2 boys have different disabilities (neither of them have autism) and people don't get it. When DS2 went to a SN playgroup his great granddad asked me if he went there so the other children would be cured of their SN by following his example. I tried telling him that no, DS2 has SN too but he wasn't convinced.

I think people who don't have many people with autism, developmental disorders or learning disabilities in their lives often assume that the 1 or 2 people they know with these are representative of everyone.
I think unless lots of awareness if built up, then this will continue. After all most people with autistic children are only aware of the vast spectrum because they have experience of their children, the children with autism they have met through friends at support groups, special schools or other things or through the extensive research that you do when your child gets a diagnosis. I only know how varied different children with autism (and disorders that present similarly) because I volunteered with Mencaps childrens services as a teen so I worked with children at one end of the spectrum who were completely verbal maybe with speech difficulties and seemed like any other child when playing, maybe presenting a little younger than their age, and children at the other end who were completely non verbal and who appeared to not even notice anyone else was in the room, wandering around making repetitive noises, maybe shaking the same toy in the same directions for an hour... but most people don't see so many children with different special needs, and aren't told their diagnosis if they do see them.