To hate Autism

[EnglishRose1320]

I know I might well be but today I am done with it. I am sick and tired of everyone telling me it brings so much joy, a different way of thinking, unique gifts etc. I'd happily swap my son's autism, lose the high IQ, the quirky traits, have an average child in a heartbeat because nothing is worth the aniexty, the depression, the self harming, the house desteoying, the life destroying that we have to deal with. I don't see Autism as a blessing and I don't know that I ever will.

My dd is awaiting her assessment, waiting list is minimum 6 months for her age range so still a few more months to go. Everything began at 13 months, life was perfect until then. At this moment in time I feel like my life is shit and I feel like dd's autism has ruined ds's life he seems such a sad little boy now. And I am a very sad mum. Dd is actually at a really good stage right now and her speech is coming along wonderfully, I'm am just so tired after the past few years, so so so tired!
I did, yesterday, finally receive an appointment from an SEN team who are arranging a meeting to get help in place at school though which is fantastic.
Dh lost his job 3 weeks before Xmas which has added a whole load of more stresses.

I would just like a break, some help perhaps, who knows what will happen if she doesn't get a diagnosis - that is such a worry for me.

Yanbu OP, it's a very hard thing to deal with

I don’t have any expectations of my gown up child to not act autistic. I don’t care how autistic he acts. It’s not anywhere as a concern. I would like him to be able to live near us, take part in the activities he enjoys and be cared for by people who understand him, who like him and who a robust enough to kind to him when he is distressed. That’s it. That’s my entire wish list for him.

Yanbu OP, I have a prick of an autistic brother. Went through many years of stress and abuse from him, and tbh a lot of the attitude from society seems to be to just suck it up.

Some people have very positive or neutral views on autism, but for my family it was a curse. I'm happy for those in a better situation but that wasnt my reality.

@Nikephorus
I think a lot of us have some idea of it.
My life at one point was devoted to having to see the potential triggers for an autistic person. Not in a NT setting with any NT expectations so I'm not sure that's entirely fair, And I'm sure lots of autism parents would feel the same.

But that's not my point, my point is to a lot of people autism is romanticised or minimalists to someone just being a bit quirky or odd and that is a huge disservice to those who love them.

For some high functioning autistic people removing their autism would yes, potentially be changing who they are integrally, for quite a few more unspoken people with autism, it restricts who they can be as people. And yes, it is completely fair to hate it.

I know what you mean about being taboo in many support groups. Ive had to leave a couple of support groups for autistic women because apparently admitting that its not always great meant that I am "ableist" even though i have aspergers myself, my partner is almost certainly on the spectrum, all 3 of my children, and quite a few in my extended family, and some of my friends. Their rigidity of thinking I guess is fairly typical for aspies, but it makes it hard to get support or understanding from them
I have found a group for autistic mothers much more realistic. We dont dwell on the crap stuff, but we can admit the difficulties.

It feels completely different when discussing it with other autistic people than it does discussing it with NTs though,

@HangingRoundInABofAlorsStance

I don’t think narrowing the diagnosis into “groups” would help as that goes even further to trying to make people fit in boxes. What we need is a better understanding of what a spectrum condition it is.

Hello OP, apologies for the interruption. We're so sorry to hear that you and so many MNers on this thread are having such a difficult time of it. .

We hope you don't mind, but when these threads are flagged up to us, we like to link to our online resources. Our special needs webguide might have some useful information.

Very best wishes from all at MNHQ.

I don't know how I feel about it yet. I dont have the challenges many of you face ds is very high functioning but is often a very unhappy little boy, totally overwhelmed and distressed but the most minor adversity, often confused and lost in his dealings with the world exhausted from masking and conforming. His siblings suffer. They love him but get screamed at for nothing and they worry about what they have done or are upset by his rages at them. And yet he looks 'normal'. Maybe he won't as he gets older, maybe he will continue to mask. I don't think I hate autism. I certainly don't hate who he is. But I am very very tired. I am also almost certainly on the spectrum too and find the noise and the complexity of it all very difficult to cope with. When I am needed the most by my children it takes every fibre in my body not to turn away and hide. It actually hurts to stay physically and mentally present.

YANBU

expat I'm so sorry to hear your DS has ASD or ASS as DH calls it.

DD was diagnosed in November and it really shocked me. She is very bright but her behavior is off the charts. All the police and fire crews here in town know her because she runs out of the classroom and hides. She has an aide and they had to replace her aide with someone who could run and climb. The previous aide was about 55 and 250lbs. I don't know how the principal hasn't had a heart attack from the partial and full lockdowns with police and fire crews coming in to find her with heat seeking equipment.

The impact on the family is huge. I'm constantly having to fight for services for my DC as well as others in the district. Next week I have two meetings at school and the following week I have a meeting with our superintendent. My new employer is unbelievably supportive and I'm just so so thankful for that.

TBH like all these things it probably depends on how it affects someone. Ds1’s Autism has always made my life difficult (he’s very severely autistic) but when he was happy that didn’t worry me. Now he’s not happy and I don’t like whatever it is that’s doing that to him.

Likewise the people I know who have much higher functioning autism. Some live life to the full and are able to incorporate their autism into their full life of their choosing (that’s what ds1 did when younger I guess). Others are made miserable by their autism.

It’s not for me to say how someone ‘should’ feel. And the support needed, or things that need to happen to turn unhappy autism into happy autism are often incredibly complex.

And nowhere near as simple as NT’s just having to be accepting of difference.

‘Mild’ autism can be a killer.

It flirts somehow with being NT.

expat Even though you live abroad you should look into social security disability for your son. He might still qualify. It pays way way more than disability does in the UK. They told us they would pay $2k a month for DS and DH earns silly money. I thought we wouldn't qualify for anything. As your income is lower the payment would be higher. I'm happy to connect you with my friend who has gone through the process. She gets a lot of therapy help and the children are now under Medicaid. Here in NJ everywhere dealing with ASD accepts Medicaid.

Interesting to see that you've been called ableist too, Branleuse. I fail to see how anyone thinks that's helpful or appropriate.

I understand your POV but for me I'd much rather 'NT' had a balanced picture of autism with all the good and bad it can entail. I don't find the overly positive stereotypes helpful either. I'm not some magical, gifted, special snowflake because I have it. I'm plain old, boring, unsociable, grumpy me, and that's fine. There's nothing wrong with that. I've no

I wouldn't be the person i was without my autism ! This being the equally lovable and frustrating person at the same time.
This meaning being able to obtain a degree in Politics at one level ,but not being able to lose a cooker at the other end. Requiring my DDs and DP to cook for me.
Being extremely positive and happy one day than the next going in to a deep state of gloom and despair.
Understanding 'global dimensions' of Politics but not understanding why i upset my 14 and 17 year old DDs feelings frequently with my bluntness !

That is Autism would i want to rid myself of it , NO i like being myself.
I understand though that being on the High Functioning side of the Autistic Spectrum , gives me little insight into the lower functioning side.

Use a cooker and forget a bag of shopping .

@Nikephorus
I think a lot of us have some idea of it.
My life at one point was devoted to having to see the potential triggers for an autistic person. Not in a NT setting with any NT expectations so I'm not sure that's entirely fair, And I'm sure lots of autism parents would feel the same.
But with respect I don't think that anyone without autism can actually have a real idea about it. You talk about having to see potential triggers but that's like me trying to look for difficulties for someone who's blind - I can work out that having a steep flight of steps could be difficult, that a busy road with no crossings could be a tad dangerous, but I have no real idea what it's like to be blind, not even if I close my eyes and try walking around. You're not living that life full-time. I appreciate that I don't have to parent a child who's smearing shit everywhere, but my point is that a lot of this challenging & downright crappy-to-deal-with behaviour is due to living in a neurotypical world and not being able to communicate those difficulties or avoid them. Stick us in an autistic world and most of those behaviours would probably cease. And you'd probably all go into meltdown having to deal with things our way. But that's never going to happen because no-one is prepared to change things on a big scale for us. Parents might make it a bit easier at home, we might make adjustments to our own lives, but we're still stuck in your world and expected to suck it up.
My autism doesn't make me quirky. It makes me difficult to understand, anti-social, different. It makes work difficult and stressful, but I have to get on with it because I need to earn to live. It makes it difficult to go out. Difficult to make & keep friends. I look "normal" so people don't get that I struggle in situations that they take for granted. Trying to explain that striking up a conversation with someone I don't know is practically impossible gains me a funny look because most people just get on and talk; me, if I do have a conversation I've got several different voices in my head trying to analyse and predict the other side of it, trying to work out what I should be saying, panic that I've just said the wrong thing.....
But I don't want to change my autism. And I don't want to have to change me. I spent years trying to fit in. Now I just want the world to adapt to let me live my life quietly. I don't understand why that's so much to ask.

Sorry, posted too soon.

I've no intention of becoming an 'autism ambassador'. I'd make a terrible one. I can't speak for anyone but myself. I couldn't be bothered, and I can never find the right words when I need them, but I'm happy for NTs to see that some of us aren't exactly thrilled about having it, because I think they should see a balanced picture, and that includes positive experiences of course.

I'm not actually fond of the use of 'NT' though it certainly has its uses. I strongly dislike this habit online and in support groups of treating NT people as the enemy, as some alien other. Yes having autism is a different experience, but they aren't the enemy, certainly not as a whole. They're the majority of the population and they might be our friends/parents/employees/employers etc and I'm bloody grateful for some of them and their support. I'd be dead without some of those NTs.

Plus I've encountered so many people who might seem NT but whom I wouldn't consider to be, non autistic yes, but I've volunteered with people with TBIs, I have a family member with epilepsy and others with varying neurological conditions. Where do they fit in? Or people with mental health conditions? People so rarely fit into neat little boxes.

'I do think many high functioning people with autism are happy enough with themselves. '

Not from what I see on the Aspie group I post on. I don't have a learning difficulty but I've struggled from childhood with my mental health, spent time in a psychiatric ward and was wrongly diagnosed with bipolar disorder.

Wherever you are on the spectrum, Autism is disabling.

It's so hard. I don't have ASD myself, but live and work with people who do. And it's a wide range, from adults to kids and people who are HF to very severely disabled. And I both love and hate autism at times.

There are wonderful, eye opening moments where things suddenly click and you understand what someone is trying to communicate, and you feel finally connected and on the same page.

But there are also so many moments where you can't get out the door or end up stuck on the side of a road for two hours because someone walked by with a hat on. And moments where things have gone one step forward and then twenty steps back. There can be a constant feeling of failure because interventions don't work or you can't quite adapt yourself into what they need. And resentment at having to always be the one to move your own boundaries and adapt for others.

There's sometimes gallows humour between parents and carers when after twenty meltdowns they suddenly realise a simple trigger they overlooked.

There are family members who are pushed to the brink. Good kind people. And in despair, you see and hear them say things you would never have thought possible.

And if it's in a work context, you can't necessarily talk about it to anyone. You go home shaking or crying and wondering how long you can keep going back. Because what will happen if you don't?

And resentment at having to always be the one to move your own boundaries and adapt for others.
You're complaining that you have to move your boundaries and adapt? Has it not occurred to you that those of us with autism have to do that EVERY DAMN DAY?!

I strongly dislike this habit online and in support groups of treating NT people as the enemy, as some alien other

Donna Williams/Polly Samuel was really good at speaking out against this.

I hate being told my someone on twitter who has never met my son that they understand him better than me just because I’m NT. I avoid those confrontations tbh as they never go anywhere but I strongly suspect I understand severe, non-verbal autism better than they do.

Stick us in an autistic world and most of those behaviours would probably cease

I wish this were true but it just isn’t in my son’s case. He hasn’t ever really had to inhabit an NT world. I suspect a lot of his distressed behaviours are due to pain or feeling unwell. Others are due to overwhelming compulsions. He really isn’t under any pressure to conform to any sort of NT world.