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.

But children of autistic parents don't need any more people reading skills than any child would need to understand their loved ones. Simply these skills would be different. Responding to different cues, differently.
not being able to handle the responsibility
What responsibility, how is that different?

Isn't this a false problem that no one needs anyone to feel sorry for?

mental health disabilities autism is a neurological disability, not a mental health disability.

For the record as a child I would have really struggled with having to manage the feelings or behaviours of a parent. It's pretty normal for a child to not be able to recognise cues and have to learn how to manage relationships. I get that this family is an extreme case and parents are doing their best but it's not a great situation.

The people who live and work with those who have additional needs are only human, they won't always get it right and they are capable of being hurt. We should all try to be kind and make allowances.

Children are rarely the problem with my son...adults seem to find it much harder to differentiate.

Snuggy, what are you talking about?

You did have to manage the feelings or behaviours of your parents and siblings and of increasing number of other people as part of your growing up as much as your parents had to manage yours.
All humans grow up learning how to manage relationships. It is a bilateral process.

You may have struggled, but you did nonetheless. We all continue to learn through our lives.

I don't understand why being next to people with additional needs 'hurts'.
Can you explain using Stephen Hawking example, whom did he hurt and how?

I've not made any claims about Stephen Hawking hurting anyone.

What I mean is that I think children should be cared for by adults, should have their needs met by adults and should learn how to behave and manage relationships but in an age appropriate way as part of their development rather than because they are expected to meet the needs of adults. When a child is still a child I think the parent has far more of a responsibility for the child's feelings than the child has for theirs. It's far from an equal relationship.

Obviously life isn't perfect and sometimes children are forced to grow up before they are ready. It's not about blaming the parents for things beyond their control but having sympathy for the children.

Snuggy, I don't follow. As so many parents discussed here, children are being cared for by their parents, regardless of parent's neurological conditions. It is your assumption that ASC is a barrier for children being cared for based on generalisations and misunderstandings still floating around.

There would be specific particular circumstances when it is not the case, and they would not necessarily relate to neurology, like it is the case with parents with drugs and alcohol addictions.

If you take an example of let's say a paraplegic parent (not referring at all to the illustrious scientist), it is not the parental suitability and rights that are in doubt, but the support available, so that the parent could as much as possible fulfill a parental role.

The meaning of disability is that people do things differently, so they need reasonable adjustments to accommodate, accept and ensure that systems are in place to enable this difference.

Insisting that only the 'normal' way is valid, that only the 'normal' way counts would be denying the reasonable adjustment, and thus discriminatory.

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.

Yes, I'm curious about this too. What do they want from us autistic people who can understand such things? Are we meant to feel guilty for being a burden to our families and the people who care for and support us? Is it just autistic people who are expected to feel this way, or do these people extend such thinking to other disabled people too?

It's especially offensive when you take into account how prevalent mental health problems like depression (not to mention low self esteem) are in autistic people. I already hate myself enough about how useless I am in the real world, I don't need to be made to feel extra guilty for being dependant on my family. And why the hell should I? I didn't ask to be born, nor did I ask to be autistic. So I guess really that some people think we should feel guilty for even existing.

And what of those autistic people who can't understand such things? What should they be made aware of exactly? Do you think someone should tell them what a burden they are to their family?
My younger brother is severely autistic and he'll never live independently. I'm not going to lie, he's hard work. But that's not his fault, and I would never dream of resenting him or blaming him for when things are difficult because of his autism. I hate to think he would ever get the idea that he's a burden in some way. People always focus on the negative ways he impacts on family life, they don't stop to consider the positives he brings as well. All they see is his challenging behaviour, they don't stop to think that he could be as sweet and loving as he is. He's funny, loves to sing and is affectionate to the point that it's often suffocating - it's also impossible to be mad at him for more than a few seconds. If anyone needs a hug he'll be there ( and he'll be there the other thousand times you don't need one too ). That's the "impact" I like to think he has on the people around him.

I never claimed that only the "normal" way is valid or that people with a disability are all automatically unable to care for children.

I don't think that expecting a child to do something they aren't developmentally ready or able to do is fair to the child. For example I wouldn't expect a typical 4 year old to be able to man a hoist, a responsible adult would need to step in and do that. Likewise it may be the case for some children that reading an adults cues and managing their emotions may be as impossible for them as that 4 year old manning a hoist and the parent would need some other support than depending on the child.

No, I don't want him to feel guilty, but that doesn't mean I can't get upset and feel frustrated and angry at the situation at times.

I'm sorry I don't shit rainbows and happiness all day everyday. Life is often difficult for any parent or carer of a child with additional needs, autism is no different. Remember as well that support is virtually non existent, even when you ask. We have been let down so many times, no one cares and no one assists, leaving us trying to blindly fumble around to manage his emotions and trying to protect his siblings.

What exactly am I supposed to do? Because sometimes it feels my only option is to contact children's services and have them resolve it.

What exactly am I supposed to do? Because sometimes it feels my only option is to contact children's services and have them resolve it.

Surely, you need to reach out to some carer's needs assessment and some support and respite. Perhaps it is so difficult because your DC needs are not properly met, so they don't cope, making it much harder for you, so you need to get their needs met.

Your DC could sense your own mood and mental state, that could increase their anxiety, aggravate the difficulties of their behaviours. This point could be the biggest factor. If your DC had less challenging times for you, maybe no it's so hard because of the cycle of your on mood and needs not being met.

Maybe if you were happy, everyone would be happier and less challenging.

Essentially it boils down to the right support of the right kind, at the right time, in the right quantity.

Ultimately, if you can't cope, you have to face a difficult decision. You see it yourself that blaming your DC, channelling the anger towards them is not solving anything.

I don't think that expecting a child to do something they aren't developmentally ready or able to do is fair to the child.
Nobody expects that, it's an assumption you make.

You've mind read everyone in the world then?

I've no idea how common or widespread it is but there are definitely cases for all sorts of reasons where children are pushed into caring roles that they shouldn't be.

If you have no idea, why do you make such an issue of it?

Because I think the needs of children and carers are also important. Everyone in such a situation needs compassion and support.

@SnuggyBuggy so basically what you are saying is some children have more to cope with than is ideal? I’m not sure that’s unique to autism, disability or even being under 18.

so you need to get their needs met.. Mmmmmm there’s an idea. It sounds to me like this family are trying extraordinarily hard to do that. I doubt “try harder” is an option or particularly pleasant to hear.

Actually both of these statements demonstrate the difference between theorising about the kinds of level of care we are discussing and reality. It’s hard hard work to raise any child, raising one with any disability is harder, raising one where it’s almost impossible to get any help or direction is harder still, add conflicting needs within the family and it would be a miracle if you got it right all of the time.

Did they actually ask for your compassion?

It is dehumanising to pity people just because they have people with disability in the family, isn't it.

It is based on the premise that the value disabled people bring to the world doesn't count. Instead it emphasizes the 'inconvenience' they cause by their very existence.

I don’t know, I think there are things that you can pity people for that don’t necessarily upset them because it’s their family. People can feel whatever they please. It’s fairly pointless though unless you can help in some way.

Again I don't need anyone's permission to feel sympathy and I'm not going to apologize for having some compassion for a struggling person. I've known a few people in a situation where they had unreasonable caring responsibilities at too young an age and suffered for it.

At no point did I claim any of this was unique to autism or inevitable in the case of autism.

Given that the diagnosis and condition are so wide, I'm not sure how anybody can suggest children of people with autism aren't impacted.

My children have to understand why their other parent does not react when they call out for them. They have to - age 5 and 7 - understand that this person who loves and takes care of them literally ignores them at key times when they need them. I have to explain that sometimes OH gets tired and shuts the world out to take a break and isn't ignoring as much as can't hear them. For the kids, they are certain it's because OH doesn't care as much about them. This happens at least weekly. They can be standing right beside OH calling out and get no reaction.

If you know what it's like to be ignored by friends at school - sent to Coventry - then you can imagine that this can be damaging when it's repeatedly done by a parent.

Also difficult for them to understand why when they cry, unless there's an obviously (like blood) physical reason for being upset, why OH has zero sympathy. They're simply not allowed to be upset unless OH sees a reason for it.

This is how OH's autism impacts the kids in a negative way. They have to adapt to their parent in a way that's cognitively and emotionally too difficult for them to understand. I do what I can to smooth the waters - on both sides, because OH gets angry at them being upset "for no reason" and doesn't let it drop.

Is OH bad person? Absolutely, definitely not. Their autism impacts their ability to read others and deal with any types of emotions in others - including happiness (gets stressed if kids are too happy too). And it impacts their ability to believe something if they can't see it or haven't personally experienced it. They're also not willing to apologise for upsetting someone if they don't think they did anything wrong..which obviously causes a problem if they can't see anybody has reason to be upset. Not everybody with autism is the same, as we know, but these are the parts of OH's diagnosis that are prominent for them.

The kids aren't carers - OH is amazing at looking after them in many other ways (I say amazing as they totally outstrip me!) - but they definitely are faced with not only a lack of emotional support from one parent, but an absolute negation of their feelings. As kids are full of emotions that they need to learn healthy ways to deal with, being told they have no right to feel them, IS hugely and negatively impacting them. As they often learn these ways by watching their parents, it's very difficult at this age for them to understand what's going on. The kids are basically expected to fill in the emotional gaps left by OH and not feel emotional pain when they do. Even if I can help them understand that their other parent has a different way of looking at things and seeing things, it doesn't remove the painful feeling of having emotions ignored or completely dismissed, their experience denied.

Clearly not everybody with autism is the same. But some people do have manifestations of it that can make intimate interactions with them very difficult and damaging for their children.

NT people can also cause problems for their kids, but that's a whole other thread (and there are many on Mumsnet about the damage "NT" people can do). This is specifically about autism and my OH's autism definitely is causing significant problems for the kids.

Autism is lifelong but you often appear "normal" to the outside world because you learn how to pass. Dd has crippling anxiety and is unable to cope with things adults normally are able to do easily. But her impact on our lives is very positive and she has a few good friends

My father was diagnosed with autism very late in life so I never understood why he behaved in certain ways. As an adult, it made it easier to come to terms with but as a child being completely ignored by your beloved father (for days at a time when at home, months at a time when he left) was very hurtful and did create longer term issues. Whenever he saw us, we were the centre of his world. Then he just forgot us again. I'm a desperate people pleaser because I would have done anything to be good enough for him to want me around.

My sister has pda. She sexually abused me. This was partly for sensation and partly to control her world as she used it as punishment if I behaved in ways she didn't like. I don't blame her, she was undiagnosed and unsupported and going through a horrific time. But I still hurt. I guess I should add, I'm very specifically talking about my sister and how she as an individual behaved. In no way am I suggesting there is a link between autism and being an abuser.

I don't need or want either of them to know the impact they had on me. But some of these posts imply that because I'm neuro typical I should deal with whatever is thrown at me and be grateful. I'm just not that resilient. And i don't think it's unreasonable to think some children with autistic parents may struggle with some things.

Again I don't need anyone's permission to feel sympathy and I'm not going to apologize for having some compassion for a struggling person no of course you don’t and can feel anyway you like. I think that the people receiving the sympathy/pity/compassion also have the same autonomy and can feel about it in any way they choose too. It IS sometimes abrasive and unwelcome. It’s lovely when people include us but I don’t enjoy by word or action receiving the idea that someone feels sorry for me for my child’s existence anymore than you would if I showed how sorry I was that you had to “endure” the presence of your child or partner.

It might surprise you to know that not everyone wishes their child was more average, or secretly wishes they could swap them for one more like yours!

I don't feel sorry for people "because of their child's existance" or parent/partner/sibling I feel sympathy because of the fact that they are struggling and suffering. I'd feel sympathy for anyone suffering anything whether it's a bereavement or a kidney stone or whatever. It's normal human behaviour to feel sympathy when you know or suspect someone is suffering.

For the record I also know families with autistic children who are thriving and I am happily married to an autistic spouse.

At no point did I suggest that everyone with an autistic child secretly wishes they were more average and you have no idea what my child is like or whether or not she is disabled or not. I find the assumptions in your last paragraph about what I must think very rude.

Do you? There was no assumption, there were statements about how I feel. I’m sure there are tons of people who welcome the pity and sympathy. On a difficult day I might I suppose. Why do you feel only your view should be expressed and that mine is rude? Of course I don’t know you or your child.