To think autistic people arent liserned to

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I would love to hear autistic peoples point of view on this. I feel that in conversations about autism autistic peoples voices are completely ignored. Autistic adults seem to be on the receiving end of nasty comments, often from some parents of children with autism and are ridiculed for giving their opinion on things.Surly things like weather you use person first language etc aren't up to neurotipical people?

Ok, I'm ready for the fire... here goes....

I am a parent of a child with autism, this is how I prefer to phrase it. Why? Because my son is a hell of a lot more than that one diagnosis so describing him as autistic plays into the hands of professionals who I need to help him and I need them to do it in a way which is personal to him and not a one size fits all approach. I have to speak for my son because he isn't able to, I would absolutely give anything for him to be as articulate as the posters on here. If the professionals slt, ot, teachers, senco, dietitian etc are able to categorise him they will fail to personalise his support. This is the only reason I care about the labelling because he is more than one diagnosis.

He is classed as having severe autism and yes this is importantant too as he doesn't have a learning disability. He is able to learn. He is actually amazingly bright in some areas. These aren't superpowers though. I would trade these areas for him if I could so that he had other abilities which means he won't need support as an adult and he can be independent. I worry he'll be abused, left in one of those awful group homes etc when I'm not here to hold people to account for how he is treated.

The social model is great but it is just a model and he has to make it through the real world where not everyone will accommodate him. His autism does disable him massively.

I do believe people with autism should have their views and voices listened to but I also think parents should too. The people with autism who are able to voice their opinions have no idea what is like for someone who can't so they are in no position to talk for them ie my son. I am in a position and will advocate for my son with autism as I would for my nt child, fiercely, legally and with my full heart. Someone who has been communicative their whole life, with minor sensory needs and able to hide their autism from the nt community has no idea of the life my son has and possibly their autism by definition hinders that.

Referring to autism not as a disability in order to appease those who can live without support removes support from those with autism whose lives are fully impacted. This is happening quite alot in the states where it has become an easy budget cut and justified by people with autism saying it's not a disability.

I do wonder if part of the problem with the breach between autism advocates and parents is theory of mind component to a diagnosis. Having the diagnosis shows an inability with communication, interaction and social understanding so the ability to understand the position of parents of kids with autism is impacted. This doesn't make your views less relevant but could account for why parents are often seen as the enemy especially those of children at the lower end of the spectrum.

Surely it would be better if parents and adults with autism worked together and shared experiences so future families can raise children with autism with as much support and guidance as possibl and give the children the best opportunities and start in life as possible?

I do think there needs to be a separate diagnosis and a distinction between the top and bottom ends of the spectrum as they are completely different and life outcome are different. In the same way a sprained ankle is different to requiring an amputation. Eg a non communicative person who head bangs and has non sense of danger is unlikely to have the same life outcomes and opportunities as someone who is verbal, articulate and can manage sensory differences with minimal adjustments eg able to get married, hold a job, look after children.

Just for the record there seems to be many arguments between parents of kids a different points on the spectrum too. Whether this is because of the possibility that many parents are undiagnosed who knows but it likely plays a part along side the never ending constant battles parents have for basics like education. There are limited funds and parents want their own children to benefit.

Fully expect come back from some of this but wanted to post to show the other side of the coin too.

@babydisney my post was really to say I can see my dd is already not being listened to because of her perceived asd traits. She is wonderful and it saddens me. I would love her to be here saying that herself but she’s only 9

I hate autistic people being labelled as 'severe' and 'mild' as it doesn't reflect the reality for the autistic person but how that person impacts on NT people or seen by them. I've had people minimise my difficulties this way, been told that I have mild autism because I can communicate and 'pass' in real life for a period of time. But internally I'm struggling just as much as the person screaming and hurting themselves. I don't live a normal life, don't work, barely leave my house and the life I do live needs a lot of support.

I see the same happening with my son. He gets overwhelmed but doesn't meltdown, he shuts down and people cannot see that he is in crisis, so he doesn't get the support he needs.

Also wanted to say I agree with Boulshired

I work with people with autism and learning difficulties, including non verbal people. Some people I work with have only mild learning difficulties but the combination with autism makes it hard for them to live independently even though perhaps if they had only one or the other they would have had a very different life.

People I know socially, and extended family members, with the form of autism previously labelled aspergers and no learning difficulties have no more in common with people with non verbal autism and learning difficulties than they do with people with ADHD or dyslexia.

People with autism should of course be listened to and respected, as experts on their own situation. This does not mean they know better than anyone else about specific other very different individuals with high care needs and and autism diagnoses.

I take issue with people who insist that Autism is a difference, not a disability. I have a distant relative who keeps banging on about Autism being a superpower. She has a diagnosed adult DD who is incredibly academic and high achieving, but this relative doesn't recognise that not all of us supposedly 'high functioning' types experience life the way her DD does. Certainly for my 12 year old DS and myself it is very debilitating in some areas and doesn't feel like a superpower in any way.

@WaterWisp, in regards to your first point I fully get that and have alluded to it also.

I actually agree with most of what you are saying however I disagree that a person with mild autism can better understand someone with severe autism. My point is that they are completely different. Having an insight into a milder form isn't near to living with the severe form and seeing someone you love live with it day in day out. The carer/parent also lives with the implications of it where as someone witha milder form doesn't. Needing glasses is closer to full sight than blindness. Blindness is a lifetime away. The two are not comparable.

To have the diagnosis a person must have impairments in the three main't areas which do not include nt to autism communication.

A mild person who struggles with communication is really gonna have difficulty communicating with a severe person who communicates by different means and the people who are able to communicate best them are those who have spent a life time understanding that nuances. Having autism doesn't give a telepathic ability to communicate with someone else just because they too have autism.

YANBU, I am not autistic but my son is. There is so much ignorance around I fear for his future.

I’m an NT parent to an autistic little boy, of course I am the person who needs to advocate for him and who knows him best.
But I also believe autistic adults can offer valuable insights, they may not be exactly the same as my boy - no two humans are exactly the same obviously- but that doesn’t mean they don’t have a better understanding of what it’s like to live with sensory issues, or how stimming helps them, or how they need longer to process verbal information. They have lived experience of these issues which I don’t, just because they (as a fully formed adult) can convey their thoughts in words on a computer, doesn’t mean they are soo totally different to my child that they shouldn’t be listen to.

LavenderLotus I am very aware of meltdowns and sensory issues in people who have autism without learning difficulties.

Some individuals living with autism but no cooccuring learning difficulties or conditions are not experiencing a life more similar to people with, say, downsyndrome, moderate to severe learning difficulties and autism together, or a serious psychiatric disorder and autism and learning difficulties together, or a near natal brain injury and learning difficulties and autism together, than they are to peole who have sensory processing disorder and ADHD but not autism.

I don't think many of us know what it's like to live inside anyone else's head, even if we share a diagnosis. Especially if the people we're hoping to understand have lots of other life impacting conditions we don't have.

I have, for a specific reason, experience of not being able to communicate properly, not being able to express what I actually want to say easily, being misunderstood and discounted. It can be turned into an advantage in starting to understand other people who have communications struggles and crucially in not underestimating them. Obviously though it doesn't always help though, and projecting my experiences can sometimes be as much a risk as a help.

[quote LavenderLotus]@thatsnotgoingtowork I think from the outside they look different, but that there are definite similarities on the inside between a person with what would be considered 'Aspergers' and what would be considered 'severe autism'.

You've got to remember that a lot of the difference between them is how easily they can pretend to be NT. Just because someone is articulate and can behave like an NT socially, doesn't mean they don't have meltdowns once they get home, or that they don't have sensory issues that they've found ways to hide.[/quote]
This is my 9 year old. To the outside world he appears NT, can communicate articulately (alot of the time using more "grown up" words) so I am questioned if he really does have an ASD diagnosis because of how polite he is (mostly "too" polite) and because he can make eye contact for a limited time. People quite often disbelieve me when I describe how he can melt down at home, become physically aggressive and destroy things. At school he has learnt how to hide his difficulties but if you watch his body langauage you can see he is rigid, as if he is physically holding himself together, which he then lets go when he is home. Nobody sees the battles we have to get him to step foot out of the house, the meltdowns because he has to clean his teeth, have a bath or wash his hair. The second we step foot out of the door, the mask comes down and he is the boy he wants the outside world to see, not the boy who is doing his utmost to keep it together. I cannot pretend to know how difficult things are for him and I am struggling with how best to help him. For those adults on here who can relate to some of things I've described with my son - what do you find best helps you? Is there something your parents did that you wish had been done differently? He won't do/use/wear anything in public to help him as he doesn't like to be different and has a paranoia that people are staring at him

Hangingwithmygnomie obviously people who were in the position your son was in, as children, can provide you with lots of insight.

My point is that, whilst your son's struggles imact his life on every level and and are in no way less than those of someone who has moderate to severe learning difficulties, non verbal or only able to produce a limited number of set echolalia phrases, and makes no attempt to mask, they are not the same struggles.

Your son may experience some of the same emotions and sensory responses. People with sensory processing disorder but not autism may too. People with ADHD but not autism may experience some of the same things. Even people with hearing loss and other physical disabiities can coincidentally experience some of the things people with autism experience, which "NT" people with no disability don't.

The range of experiences and needs is so wide, and not really in terms of who needs "more" but of the needs being different. Completely and utterly in some cases. It's absolutely not about who is suffering most! It would probably be useful to have differnt terms to use.

@MajorMojo

What a refreshing thread. I'm undiagnosed, though I have a condition which frequently co-exists with Aspergers. I've been told that I can't have it (ASD) because I'm female!

Female with a diagnosis here!

I went private through the National Austistic society and it was one of the best things I ever did

Sorry it was more the last paragraph that I was refering too and the disbelief when people find out he is ASD diagnosed. The dismissive way that people brush his difficulties aside because he is able to have a conversation on such a grown up level. My best friends is one of the few people who have seen him meltdown and it reduced her to tears, when she admitted she didn't realise what I have to deal with, she was so shocked but even now, she will say that she doesn't know how I have the patience to deal with him. He's my son and I love him and I have no choice. I absolutely agree though, that his struggles are not the same as someone who is more profoundly affected and non verbal or who may have learning difficulties alongside. I generally liken my son to having Aspergers but have since been told that this is found to be offensive due to his Nazi involvement. I have noticed with some of the Facebook groups that I'm on that there does tend to be a who has it worse/harder thing going on but as you say it's not a case of that, it's just different. My thinking is, who better to get advice from than the now adults who were once the child similar to my son?

Yes I am also desperate for advice from adults who are neurodivergent because I have no idea how to help my dd