To wonder why the f* people still think vaccines cause autism?

[coolitcathy]

Name changed for privacy reasons.

Stumbled across a Facebook group about "parents against vaccines" a few minutes ago which suggested, nay STATED, that vaccines cause autism and are essentially poison. I think the hysteria is potentially getting worse due to this Covid vaccination that's getting rolled out at the mo. Is anyone still infuriated or is the anger dying down now as we all get distracted by something else happening? Also why is autism seen as such a bad thing?

(If you're anti vax I'm open to you sharing your viewpoints but I haven't seen any information that makes me consider that outlook)

But this is a bit chicken and egg. you want to be seen as bad enough to count BUT Don't want parents (who may be NT) to complain about the bad aspects of parenting autistic children. Don't you see the inconsistency of this?

I've said I understand why people would want to get rid of autism, to spare their children pain. I've explained that I can empathise with that and it's a natural human emotion. You can say "I struggle when Timmy does x" and that's fine. But making your children feel bad about their autism or letting them know you wish they were different is harmful. That's what I've been saying this whole time.
And to reiterate I'm also not saying anyone on here has been doing that necessarily, but I've witnessed it online and formed my standpoint based on that information.

And again the assumption has been made that I am "high functioning" (though these labels are careless) as though I were referring to myself as a "high functioning" person when i said "people".

The closest we can get are non verbal people who can communicate through other means. Surely those people are closer to non verbal people who can't communicate than either you or me?

But the life experience of people who can’t communicate via other means or share their views on this is completely different from those who can. So you are essentially accepting that only those with this ability can be represented, where does that leave those who cant? Completely excluded from the consensus. And while I am not a mind reader, I think I have a much more in depth knowledge of how that impacts someone than a person who has never had any experience of this. Excluding carers of those with this level of disability because they couldn’t possibly understand means that these apparently inconvenient autistic people are forgotten and not part of any consideration, which leads to skewed representation. I don’t think they are closer no, those who are able to communicate are closer to you and me than they are to those who can’t communicate in any meaningful way.

[quote trulydelicious]@ForestNymph

I'm interested in your views on the following if you wish to share (due to some of the experiences you've described on this thread).

Do you think knowing from a very young age that you are autistic is always helpful?

Say someone who could be on the very lower end of the spectrum (maybe Asperger with subtle but recognisable traits - if you know where to look, so to speak)

I'm close to people like this (ages ranging from 50 to 80 years)

The ones who are in their 80s have grown with parents who were not very clued up (to be expected at the time) and viewed their differences as 'quirks' and helped them through their difficulties (because they did struggle often).

I wonder if knowing that they were different when they were little/teenagers would have perhaps made them self concious and prevented them from getting on in life (e.g. studying for a degree, getting married, having children, etc). Being oblivious to this matter in a way could have been beneficial?

I sometimes ponder this and can't make my head around it.

Needless to say, I don't mean people who have severe limitations or whose MH is suffering badly etc.[/quote]
I think its useful to know as long as you don't take it as it being a flaw or a problem. Most of us know there is something different about us and it can be helpful to know that we just have different neural wiring. Nothing wrong or broken or defective. Just different.

I don't think it necessarily holds people back either. I went on to have two more kids after knowing I was autistic, the only impact it had really was to get my other kids on the waiting list quicker because "mum dad and brother ASD" means they're less likely to dismiss their sensory issues as something they'll grow out of.

My dad realised at 60 that he is autistic, although he initially noticed in his 50s and kept denying it for a while. He has now accepted it and says he wished he knew because he's beaten himself up for certain traits he has his whole life, whereas now he knows why he feels that way about stuff. He vastly vastly prefers neurodiverse to autistic as his identifier, interestingly.

@ForestNymph

Thank you

@DonkeyMcFluff

We often don't want to be their friends though. We just don't want to be harassed and discriminated against Not “being friends” results in a lot of silent discrimination though. Kids who get left out and not invited to parties. Kids who are bullied for being a “loner”. Employers who don’t hire you because you won’t fit in with the team and they can’t see themselves having lunch with you. Or employers who reject you because you’re not bubbly and smiley enough to present the right image to customers. You get access to what’s available to everyone but as soon as there’s a choice to be made you won’t get picked.

It’s not enough to go through life simply being tolerated and not harassed or discriminated against. Most people want to be liked and have friends. It’s utterly miserable when nobody likes you and you’re always alone and have nobody.

I used to feel that way about parties as a teen. Eventually I got invited to one. Went and was thoroughly disappointed. Remember thinking "is this it?" and left after an hour.

There is absolutely nothing wrong with being someone who isn't interested in socialising.

The employer thing is a genuine issue and is a massive bugbear of mine. That workplace culture needs to die and I'm hoping covid working from home etc will hurry it up.

[quote trulydelicious]@ForestNymph

Thank you [/quote]
Oh the other way it was useful for me personally was maternity care. I wanted an elective cesarean birth because the idea of giving birth at a random time, a ward possibly understaffed, and having no control really freaked me out. I got it the first time round (before I knew) but the second time it was easier to explain to staff "I have ASD and I don't like uncertainty. I want my birth as planned and prepared as possible. I want to know everything that is happening and to be kept informed"

I found people were generally understanding about it and it took a lot of anxiety out of it. I didn't get what I wanted due to prematurity necessitating an emergency CS rather than the nice calm elective I'd hoped for but they still did their best to keep me informed and explain everything so that I wouldn't feel uncomfortable with change and I appreciated that.

The irony for me is that when I was a teenager and struggling massively with my mental health, eating disorders and social issues, several psychiatrists told my mum I should be assessed for ASD and she refused. It came up again when I was at university but I didn’t see the point - I figured I had gotten this far and it wasn’t necessary (I was dealing with some other major health issues at the time and being made out like a hypochondriac- I figured that if I got diagnosed they would blame my pain on autism rather than find the cause, which they did eventually but took several years).

Then I left uni, started work and had troubles - bullied badly in a few workplaces etc. I never put the two together until my twins were diagnosed.

Had I actually been diagnosed, I would have said that ASD wasn’t that bad, that I had managed fine and society was the problem, and my unresolved issues with my mother would probably have made me quite critical of some parents too. I would have had no knowledge of the sort of things my children are facing now, but I would have been considered more qualified to comment.

I’ve posted on MN before about whether it’s worth pursuing a diagnosis or not but I can’t really see any point where it would be useful - I’m never going to be able to go back to a typical job mostly due to my own health issues but also the twins’ needs in the short to medium term at least. I’m not having any more children, etc. I don’t have anyone to give any info on how I was as a child which I gather is quite important.

I’m rambling now - but when I was a teenager / in my 20s I think it would have been very useful information to know one way or the other.

@SinkGirl

The irony for me is that when I was a teenager and struggling massively with my mental health, eating disorders and social issues, several psychiatrists told my mum I should be assessed for ASD and she refused. It came up again when I was at university but I didn’t see the point - I figured I had gotten this far and it wasn’t necessary (I was dealing with some other major health issues at the time and being made out like a hypochondriac- I figured that if I got diagnosed they would blame my pain on autism rather than find the cause, which they did eventually but took several years).

Then I left uni, started work and had troubles - bullied badly in a few workplaces etc. I never put the two together until my twins were diagnosed.

Had I actually been diagnosed, I would have said that ASD wasn’t that bad, that I had managed fine and society was the problem, and my unresolved issues with my mother would probably have made me quite critical of some parents too. I would have had no knowledge of the sort of things my children are facing now, but I would have been considered more qualified to comment.

I’ve posted on MN before about whether it’s worth pursuing a diagnosis or not but I can’t really see any point where it would be useful - I’m never going to be able to go back to a typical job mostly due to my own health issues but also the twins’ needs in the short to medium term at least. I’m not having any more children, etc. I don’t have anyone to give any info on how I was as a child which I gather is quite important.

I’m rambling now - but when I was a teenager / in my 20s I think it would have been very useful information to know one way or the other.

The main benefit is they sometimes do an adhd screen as well because something like 70% of people who meet the criteria for one meet it for the other, and if you do, adhd can be medicated which can help immensely with the executive functioning issues that can go with it. Dont know if that's of interest to you

And not all areas do it either, so it does depend. But worth knowing about.

Thanks, I’ll consider it again in the new year - I strongly suspect one of my boys has ADHD (my brother does so fairly familiar with it). I was trying to get their tribunals out of the way and get them settled into school before I even thought about it again, haven’t had much head space for a long time!

I definitely have undiagnosed ADHD, I meet all of the criteria and some.
I'm not sure about ASD.

At the age of 45 and unable to work for similar reasons to sink i don't see much point in being diagnosed.

And my husband is undiagnosed Autistic.

As is his mother and we have the eccentric scientists and loners etc going back through the family generations.

No one seems to have had the struggles that my son has which is why he was diagnosed and subsequently so was his sister.

@SinkGirl

Thanks, I’ll consider it again in the new year - I strongly suspect one of my boys has ADHD (my brother does so fairly familiar with it). I was trying to get their tribunals out of the way and get them settled into school before I even thought about it again, haven’t had much head space for a long time!

My son has ADHD with ASD (as do I but I take medication for it and as a result it doesn't resllt affect me anywhere near as much as it did), and the dual diagnoses have helped us get extra support for him.

Its annoying having to fight every step of the way. Mainstream school treated DS appallingly and excluded him repeatedly, and I had to fight for a year to get him an EHCP and moved to a different school. You'd think the process would be less clunky and disorganised but it isn't and its shit

@cantdothisnow1

No one seems to have had the struggles that my son has

Yes, some people (in my experience the older generation) seem to just about have coped

@SinkGirl

I was a teenager / in my 20s I think it would have been very useful information to know one way or the other

Yes, and the teenage years are very difficult

I’ve honestly never experienced anything as corrupt and broken as the EHCP / SEN system generally. You would never believe how bad it is until you’ve experienced it. I came pretty close to a nervous breakdown this year and was on Valium for a month before the hearings which is ironic as the hearings were the easiest part since the panel actually gave a shit about the law. I’ve never put so much work into anything in my life. I can absolutely understand why anyone would be scared of having a child who has to go through this system and we were lucky in a way because their needs are so patently obvious that we haven’t had to fight for assessments and diagnoses. I have friends whose children have made it to mainstream school before the difficulties have become apparent and their battle is horrendous. On the flip side, our local authority assume my boys have severe learning disabilities because they can’t talk, and I had to spend several thousand pounds we don’t have to get independent assessments to prove they are very capable of learning in the right environment, which was never going to be a PMLD school.

It has really paid off - the twins have only been in their new school for a half term and don’t have SALT and OT input there yet but all of our lives have gotten so much better since they started. But most of this year, no respite at all, stuck indoors, unable to give them what they need, getting no sleep and managing the appeals at the same time... I was absolutely desperate to be honest, I’ve never struggled so much in my life. We don’t have any family support so we have just been firefighting for years.

There are so many things that could change in society to make my life easier, no question at all, but it’s really not me I’m worried about - it’s them. I find the worst thing is not knowing what will happen in the future - if I had a crystal ball and it showed me that they stay non verbal / unable to communicate forever and needed constant care, at least I know. It’s the hope that things might get easier for them that I find hardest to cope with because when another year passes and we are still where we were with no real changes and things still being so hard for them, it’s really tough.

I don’t think the next year will be like that though - I can already see the positive impact the school is having on them, they are so much happier and one is starting to share his excitement with us rather than being completely insular. I am seeing tiny signs that they may be starting to understand things that aren’t routines or visuals. So I’m back to feeling hopeful but always try to remain realistic.