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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

See all MNHQ comments on this thread

Original poster

To hate Autism

650 replies

EnglishRose1320 · 13/01/2018 15:19

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.

OP posts:
HangingRoundInABofAlorsStance · 13/01/2018 15:41

Bishop Do you mind answering some things for me (only if you want to) When did you know you had autism and did you have meltdowns when you were small or only withdrawal? Can you remember from an early age what helped when you were anxious and is there anything a family member did which you remember positively/negatively? thanks in advance x

Chugalug · 13/01/2018 15:45

The worry as well ,for the future,two of my kids will leave home ,live an independent life ...two of them will either always live at home ,or have supported living if we are very lucky ...he's 6 foot 3 ,the size of a man.looks like a man,as vulnerable as a child,it's scary ,I preferd it when he was a child,he didn't stand out as much.he talks and laughs in his room ,when there's just him there,like proper conversations,I should really listen in ,but I can't face the threat of them bringing up sectioning him again..so I don't listen

CorbynsBumFlannel · 13/01/2018 15:45

What is the alternative to saying positive things though? Either not speaking about it at all or saying 'I'm so sorry that must be awful' etc which some people would take objection to.

Sirzy · 13/01/2018 15:45

the thing I hate most though is Other people and how little they understand, or when their “understanding” is based on stereotypes.

The main issue is how un autism friendly the world is. It’s no wonder it’s a battle to get ds out of the safety of the house

lavenderjasminerose · 13/01/2018 15:46

YANBU.

Schroedingerscatagain · 13/01/2018 15:49

I do so feel your pain and frustration, I hate the associated conditions within autism, married to an anxious aspire who has previously attempted suicide, currently dealing with a teen aspie who’s life is controlled by her anxiety and misophonia balancing this with a second dyspraxic teen

Some days are good but I’m so tired of trying to balance all their needs and stop them settling each other off

At least no one tells me how wonderful it is because it isn’t I just try and remember that autism is not a label that defines them, they are all individuals, mine and I love them with all my heart

lottieandmia22 · 13/01/2018 15:56

With all the negatives there are some things about my autism that I like.

Evelynismyformerspyname · 13/01/2018 15:57

@HangingRoundinABofAlorsStance

Try posting on the living in Germany thread in the living overseas section. There is/ was a poster on there who lives in Germany and has two autistic children. She is actually German but lived in the UK in the past and speaks English to her children. She seems as knowledgeable about the system as anyone, and I think her eldest has PDA. She has a blog but it's in German. I think she's done some work translating English material on PDA into German.

I'm afraid I can't remember her MN name, but if you post on living overseas with a title about living in Germany with a child with PDA and autism she might answer.

This is her blog:

weltausbausteinen.de/

You might be able to contact her through that alternatively.

Snowysky20009 · 13/01/2018 15:58

As said I've not a child with asd, but have worked with those who do.
When I became a manager this contact would be less, but I still advocated for them in their best interests.

A big thing that stuck out for me was social workers. Please this is not a rant at them, just what I've come across. We found on numbeous occasions, social workers would leave and be replaced. This meant our service users may have 3/4 in a year- they didn't know each other.

I remember once incident arguing with a ss, she was adimant that our su go shopping on a Friday afternoon as an activity of daily living. I argued against this. It was the wrong day and time. Friday when everyone's leaving work, people buy for the weekend, so it's busy, the smell of the bakery and the bright lights. Let them just pop to the local shop. They are still achieving the objective. She couldn't understand the sensory overload.

It so easy for people to say do x,y and z, when it's not them having to do it.

TenancyTroublesAgain · 13/01/2018 15:59

YANBU.

Plantlover · 13/01/2018 15:59

Snow sky

I wish people would talk more openly about hard it is to parent a child with autism.

I have se h posts from siblings talking about how hard it is but not parents on mumsnet.

Nikephorus · 13/01/2018 15:59

The main issue is how un autism friendly the world is.
This ^^. The world would be a lot easier to cope with for many of us with autism (not all I admit) if it wasn't designed for NTs. I don't mind being autistic, but I wish I didn't have the anxiety that goes with it. A lot of that would go if the environment was designed better and people weren't so unreasonable.
(Have to admit that I hate these threads though - they always make me feel as if we're second-class somehow just because we're autistic. I know they're a rant against autism but they feel like a rant against autistic people and that's a kick in the guts)

goingslightlycrazy · 13/01/2018 16:00

YANBU it's incredibly hard, isolating & never bloody ending

Allow yourself to feel despair today & hope that tomorrow you will feel brighter Thanks

FreddieClaryHorshieLion · 13/01/2018 16:02

Not autism but im pregnant again so drastically lowering my Ritalin.

I feel like absolute shit. And I hate it that people mean ADHD means that I’m happy go lucky, energetic, or tell me that ADHD enabled me to learn ‘so many languages’ (one of them English) and that I should be glad I’m intelligent and not one of the people with ... (insert pretty much anything. Seriously. Well, be glad it’s just ADHD and not depression, e.g.).

Sorry, I know it’s not autism. But I’m lying on my bed, crying, I have a splitting headache but I’m too keyed up and anxious to think about sleeping.. I need to wallow / vent.

And DH and DC are being absolute angels but I just want to punch holes in the wall and scream my head off.

Aeroflotgirl · 13/01/2018 16:06

Autism is a spectrum disorder and its so different for everyone, one persons experience might be totally different to another's. You are so right, I agree with you, I hate it! The anxiety and meltdowns. The uncertaintly of life. That dd won't be the same as her peers, she is on a totally different wavelength. I don't know if she will be independent, or be able to manage money (she is nearly 11), won't be doing GCSEs like her peers, or have similar experiences. But we have it easier than some, who need 24/7 care, who are unable to care for themselves, or connect with the world.

yoyotogogo · 13/01/2018 16:10

My youngest is undiagnosed but I suspect aspergers or if he is autistic he is high functioning so no one wants to know.

ExH also suspected aspergers and is completely resistant to there being anything 'wrong' with him despite the sensory processing issues, meltdowns and daily battles I have with him. Soul destroying. Now he's older he refuses to wear ear defenders as he 'looks stupid' so now we can't go anywhere with background noise.

My parents also advise me against diagnosis as they say he's best accepted as himself and not 'a label'. Hmm. My eldest is a dream by comparison.

My son is high functioning and yet I feel your pain OP Thanks

Bambamber · 13/01/2018 16:12
Flowers
derangedmermaid · 13/01/2018 16:14

Nope. Yanbu. ThanksThanksThanks

Finalpaoa · 13/01/2018 16:15

yanbu Flowers, I have asd and I often wish I could just press a button and get rid of it.

tinytemper66 · 13/01/2018 16:16

I hate my son's cerebral palsy! Would swap that for an average person without a disability but I can't so I have to accept it! It's very hard to accept and some days - he is in his 30s now, I find it too hard to accept and get so down about it.
I often wonder what will happen after we are gone!

wrenika · 13/01/2018 16:21

YANBU, but I don't think someone living without autism gets to say they wish it didn't exist. You're wishing to take away a fundamental part of a person. If you take away autism, the autistic person will not just be the person you see minus a few quirks.
Sorry, but I hate that thought process because when I try to think of myself without autism, it scares me, because it is so much a completely meshed part of me - both the good and the bad. I can't travel outside of the town I live in...in fact, I very rarely travel anything other than the 15 minute route into town for work, or the route to asda to do shopping. Because I can't cope with anywhere else. I don't have friends, at all. I need medication for anxiety even going about my normal day to day life. But I still wouldn't trade any of it. I have the most amazing internally creative mind. I can't communicate it to others, but it keeps me amused. I wouldn't want to trade it away, no matter what. Would others think they would in my stead, quite possibly...which is why I hate people thinking they know this when they don't actually have autism. No matter how intimately you think you know it, you simply can't imagine the autistic mind if you don't have it.

Nikephorus · 13/01/2018 16:27

I have the most amazing internally creative mind. I can't communicate it to others, but it keeps me amused. I wouldn't want to trade it away, no matter what.
This ^ in such a huge way! This is why I wouldn't want to lose my autism, it would change my brain and I love my brain. It's everything that makes me what I am. It makes me happier than anything else. And my autism is part of what makes it.
So many of the struggles of autism are caused by being in a world that isn't designed to accommodate us. Don't try and change the autism, you can't. Change the world - that can be changed if anyone could be bothered to try for us.

Ericaequites · 13/01/2018 16:28

I have Aspergers. I'm 47, and would gladly take a pill to make my meltdowns and stubbornness go away. It's reasonable to hate autism, because of how it hurts people and their families. Please don't hate your child with autism; they didn't choose to be how they are. They are doing the best they can.

Annwithnoe · 13/01/2018 16:33

I hate having to be a completely different person than I am. DS1 was distressed about returning to school after the holidays, as were all the dc, and I want to be kindly sympathetic to them all and honestly I miss having them underfoot too and would happily do away with school. So going back to school in our house is a day of hot breakfasts, vests and shirts warming on the rads, nice lunches... little things that we don’t have time or energy for most mornings.

But DS can’t manage those emotional grey zones and the only way he can pull himself together is for me to be the cross side of firm “get down that stairs right now young man and put your coat on....”. Once I’m cast properly in the role of bad guy, it seems he can handle all the unfairness of the world. But when I’m mild, he’s anxious and has meltdowns. It’s so exhausting being something I’m not. And then he’ll come back from a play date and wonder why his friends’ mums are all so much nicer than me Hmm.

derangedmermaid · 13/01/2018 16:35

but I don't think someone living without autism gets to say they wish it didn't exist. You're wishing to take away a fundamental part of a person. If you take away autism, the autistic person will not just be the person you see minus a few quirks.

Not all autism is Quirk and charming awkwardness.

There's the less talked about self harming, shit smearing, violent side of autism that is heartbreaking as a parent or career, not to mention as the individual.