To think autistic people don’t understand the impact they have on people

[SpectrumBlues]

Is a pretty appalling statement to make?

(On the guest blog thread about the under-diagnosis of autism in women and girls)

As an autistic person, I find it hurtful and also deeply unfair. But am I completely naive - are we really just viewed as horrible sub-humans? Should I give up trying to argue that we are just people who process the world differently? Is the fact that I have had to suffer a whole load of bullying and pain by NT people because I’m different irrelevant?

I know this is a huge indulgent pity party but I just don’t get why hurtful comments are continually made about autistic people in this website and it is accepted.

I’ll now await deletion.

A fine bit of minimising there FriarTuck . The OP and her other children won't just get to skip off happily into the sunset when her ds turns 18. They'll carry their experiences with them and it'll effect their whole lives too.

BarbarianMum you’re right I won’t skip off into the sunset as I’m autistic. But apparently all those tainted by my autism will carry the scars I’ve inflicted on then.

However I’ll also be carrying the scars that my NT family inflicted (unknowingly) on me as I was made to feel like a failure in all aspects other than academic. The social outcast who’s parents tried to arrange play dates and socialising for me up until I went to Uni. The “you’re a funny little thing”
Comments from teachers. The teasing and ostracising from peers.

So scars from unintentional behaviour and scars from intentional meanness. Because society finds it very hard to accept someone who is just different and my parents, probably knowing this, tried to shoe-horn me into “normal”. And that results in a whole load of difficulties as setbout by FriarTuck a few posts ago.

I guess my question is whether as it's better that I just avoid the issue of autism completely because I dont think I can ever keep up enough with it to not come across offensive.

For example I've had people in my life who I met back at uni who identified as having Asperger's or mild autism or as "a bit on the spectrum", I thought I understood where they were coming from even if not the details. Now I learn that this is the wrong way to talk about it and I'm just glad I didn't make a faux pas of using these terms in real life because people seem so unforgiving of this.

It's not the only thing, there is loads of stuff these days with ever changing complex language and accepted norms where it feels like social suicide to accidentally use the wrong words or have the wrong view. It doesn't half make me anxious.

I'm giving up because this is just turning into 'parent's of autistic children are just shit, and also don't realise how shit they are'

I do my best, but I am not going to pretend that it isn't easy and that it has taken a huge emotional and mental toll on me. As I said we don't each live in a bubble.

At least I know in 7 years that DS will turn to my face and tell me how shit I was, so thanks for the heads up.

It can be true though can't it. My niece has an autistic child in her class who constantly hits, kicks, punches and spits as well as disrupting the class on a daily basis and being allowed to do things that the other children can't because they can't concentrate on normal lessons (but are kept in class).

The children have all been told not to react (defend themselves) because this child is autistic and needs understanding and to tell a teacher. This has caused my niece to get very upset as she feels she is a punching bag to this child and just has to take it and her feelings and safety don't matter.

Of course the teachers always verbally tell the child off when they do this but it happens every day and the child never changes. The whole class suffers because they feel they cannot react or defend themselves and they are wrong if they do. They are being conditioned to believe that the feelings of this child are more important than their own.

My ds would never tell me how shit I am, because he knows that even when I am a bit shit I am also trying my very best for him and his siblings and always always will. I understand what people mean by mildly autistic. Intent is everything. Please DO talk about, ask questions and draw YOUR OWN conclusions. People “being offended” is not a top trump (ie a winning argument). I think it IS important to try not to hurt but not at the expense of conversation.

The idea that I am going to dance off into the sunset and “have a break” from autism despite “only” being a parent is ludicrous and shows a glaring hole in the understanding of the reality of many families lives. None of what is being said reflects autism and it’s impact in my experience.

Dothehappydance

I really didn’t want mynpost to be read in that way. I don’t have an autistic child so I don’t know how hard it is. My parents didn’t know I was autistic (very late diagnosis) hence the problems for me.

I don’t doubt things are very tough, I don’t doubt your parenting skills at all (obviously I don’t know you, but I certainly don’t have any evidence at all so suggest you are a bad parent). I certainly don’t want to suggest that all parents of autistic children are terrible and I apologise profusely if you got that impression from my post.

I’m just think what this thread highlights is the need for acceptance on both sides (and I’m actually focusing on ASD/NT relationships rather than parent/child) that because of the different ways each “side” thinks and perceives, BOTH can upset the other unintentionally. If there is intentional hurt, then that is because there is something bad in the person being mean - whether they are NT or autistic.

I don’t think anyone should be being punched in school. The child doesn’t necessarily need to leave but whatever is causing the behaviour needs to be addressed. Autistic children behaving like that are JUST as distressed as NT children behaving in the same way. The stimulus is probably very different but the outcome is, I believe, the same. What would cause your child to hit a spit? If they faced that daily would you save them? Help that child and you will help everyone.

I think lots of NT people don't understand the impact they have on my son who has autism. I think some of them don't care about their negative impact. Ds is supposed to just put up with this.

The children have all been told not to react (defend themselves) because this child is autistic and needs understanding and to tell a teacher. This has caused my niece to get very upset as she feels she is a punching bag to this child and just has to take it and her feelings and safety don't matter.

However, the people giving your niece the impression that her concerns don't matter are the teachers, who, presumably, aren't autistic.

Obviously I can't speak for every autistic child, but the behaviour you describe is evidence that the autistic child can't cope with their environment, not that they really like punching and kicking and don't care about others. If that were the case they would have a different diagnosis.

Obviously I can't speak for every autistic child, but the behaviour you describe is evidence that the autistic child can't cope with their environment, not that they really like punching and kicking and don't care about others. If that were the case they would have a different diagnosis.
Beautifully put.

(BTW I'm not saying that teaching and having an autism diagnosis are mutually exclusive)

mothers and fathers continue to support their children with autism into adulthood. I don't mean financially but emotionally and socially. They don't get to skip off into the sunset.

But most of the time they don't WANT to skip off into the sunset. They love their children, they want the best for them, they find ways of supporting them.

I think this whole argument is a bit nonsensical. Babies are "selfish", families have to fit around screaming babies, and toddlers all the time, adolescents are often extremely "selfish" and make family life impossible. I use the word "Selfish" to mean unable to see the parents' or siblings' point of view. Everyone has to fit in with developmental stages which are "selfish" and cause other people pain, all the time. Mothers with PND, fathers and mothers who have marriage breakdown for whatever reason, grandparents who are sick and need extra care, losing your job, a job with long hours that is unavoidable for the family's welfare..all these things affect siblings and parents and they might not be things you CHOOSE to happen to your family.

Having a sibling with autism or a child with autism, might or might not be destructive and upsetting to members of your family. But it isn't something you can stop, anymore than you can prevent your mum getting PND. What you can do, is make the condition less painful to those around you, by understanding WHY you or your child melts down and attacks others/withdraws emotion, fixates. You can support them and make strategic interventions..plan the day..plan for extra help, set boundaries, explain things. You cannot just say oh they are so selfish and ruin everything for everybody, it isn't fair.

Anymore than an autistic person is entitled to say, my life is miserable it isn't fair, everyone is to blame... I love my life, I love my special interests, I love my children (one of my special interests if I think about it) I love my spidey sense (call it sensory overload sometimes) No I don't like being anxious about things that other people can manage easily (M4 anyone..or how about holding a big dinner party for 10 people, or doing five errands in swift succession, or talking to someone in the car whilst trying to drive...no cannot do any of those things) I'm sure my mother had a hard time dealing with me, yes, I can look back and think it must have been "tiring" for her.

But it is nonsense to say autistic people don't understand how others feel. At stages in your life, perhaps you are more prone to being anxious and fixed, which might and probably does affect others. But that isn't the same as not understanding other people, we are picking up on how other NT people feel the entire time, it is part of our sensory overload, that we cannot tune OUT.

It doesn't help that the NHS puts so little money and resources into autism diagnosis and support. I feel like my Ds's difficulties aren't important and don't matter. I'm sure if he had a bad leg and had been referred in July last year then he would have most probably been assessed by now. Unfortunately he is still 103rd on the waiting list for a SALT assessment. He's 14 and struggling but I get the impression that no one really cares.

Even if you do get a diagnosis they send you on your way to try and do the best you can. Having to do battles with schools and fight for small amounts of help. I'm wonder if there was better diagnosis and support in the UK then maybe the impact on families would be less.

ds2 watched part of Rainman on Friday night by himself (it was on telly). He told me about the bit where Dustin Hoffman refuses to go on the plane, and said to me..Was I like that, Mum? {Ds2 used to refuse to go on the plane from 7-12, and had panic attacks and screaming for days in advance..at one point we had to book ferry crossings - a regular destination) He looked back on his behaviour and was able to see how he had changed, but also to accept that some people with autism continued to find things very difficult and make things difficult for family members. He being very funny about it, self aware, his own thought processes at the time were very similar, arguing the toss etc. I use this example because it was a developmental stage for ds2 17, who has autism, to have meltdowns, and cause family upset over this particular issue. And it has passed.

Adaptations don't stop and boundary setting doesn't stop though.

sometimes other adults and my own children will pull me up on my interactions, and set "me" boundaries, and take me out of "my" comfort zone. It isn't good to just give up and never do things that are frightening or overwhelming, often when you've done them your life is enriched and the better for it (as ds2 found out about planes)

On the other hand, sometimes it is all too much and you do want to say, I cannot do this, this is not me, pushing me beyond my limit is actually going to be damaging and destroy my better self, and turn me into a horrible stressed person.

That’s sad I clicked on this post expecting it to be positive.

I was thinking about all the autistic teens I have met and the wonderful impact they have had in my life.

This is such a complex conversation, exploring the topic of disability in the family and in personal relationship, because that is what it is about.

It is an emotional topic and lines are so blurred, it is uneasy to identify assumptions and generalisations taken for certainties.

Would be good to have some ethics experts and human rights experts to provide a perspective.

Because ideas expressed on this thread include the suggestion that people with mental health disabilities have fewer right to equality that other minorities and that perhaps they should not even have children.

This is not a new idea.

This is a very worthwhile conversation, when such ideas keep coming back.

The OP engages this question from a human, empathetic perspective, but surely 'sympathy' should not be the only thing that stands as the counter argument to that recurring idea of what to do with disabled people.

I suppose the other side of the coin could be the rights of the child and how much emotional and practical support they could reasonably be expected to provide a parent at what age.

The subject of young carers is a thorny one in general

Why don't e discuss the subject of support and care in case of someone like Stephen Hawking.

Udoubtfully, his condition had a huge impact on the life of his family, on his colleagues, on many people around him.

So, what could he have done to 'understand' and 'reduce' his impact on them?

But if they did understand the impact, what are they meant to do about it?!

And I suspect that a lot of people with autism do, to a degree, understand that it impacts on other people. So, not only do they have the trouble of having to navigate life on a 'normal' template, but also the guilt added on top, over something which they have no control over.

Stephen Hawking wasn't cared for by unpaid children

I think the the idea that autistic parents are cared for by unpaid children is a bit of a stretch. A myth and a damaging at that.

Autistic adults are not more cared for by their children that non autistic adults.

Generally, all family members should love and care about each-other. This is a natural, healthy order of things, it provides emotional support for both generations.

The premise that autistic people are a burden is basically based on denying their value as humans and dismissing their contribution to family and society.

Autistic adults do so much to support and advocate, to ensure the care and access to education to their children with SEN. Who ever does more than parents for the autistic children? some of those parents would be on the spectrum as well and would do absolutely their best, more than anyone else to support their children. They could use their insight into the condition to help and provide better opportunities for their children. They would do the same , I am sure, for their non disabled children.

The children themselves would surely enjoy all the benefits of having a loving parent supporting them unconditionally. It is THEIR mother, THEIR father, THEIR siblings. And like for all families, these are the people that are the closest for them to cherish and support each other unconditionally even in challenging circumstances.

Healthy parents can have accidents and become paraplegic overnight. Should their children tip them into the river?

There are moral, emotional benefits for children to care for their family members, huge benefits to society of accomodating and enabling disabled people to contribute to the best of their ability, to fulfil their potential, like the example of Stephen Hawking demonstrates.

This is a foundation of being human, the right to family life that is being questioned here.

SnuggyBuggy

Stephen Hawking wasn't cared for by unpaid children
Eh?

His children were just as much "unpaid" carers as the siblings of children with ASD

I'm guessing situations life the one mentioned above where those 3 children had to learn how to care for their mother is rare. I was just thinking what if a child simply didn't have the people reading skills for example to recognise when a parent was about to meltdown?

No easy solution but I can't help but feel sorry for a child in that situation. It could cause a lot of anxiety especially if the other parent blamed them for not being able to handle the responsibility.