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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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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:
Original poster
EnglishRose1320 · 29/01/2018 08:28

Any advice on how to re set a bad sleep cycle? DS is currently staying up all night, at best getting a couple of micro sleeps, he will then fall asleep in the morning or around lunch. Nothing I do seems to keep him awake. He is tired at the wrong time and he doesn't want to push through being tired or try and sleep when he isn't totally tired. It is completely destroying the very fragile relationship oh and I have left. Oh will be going to work today on a grand 2 hours sleep. I will spend the day trying to keep ds awake and he will get nastier and nastier and still fall asleep.

OP posts:
Original poster
EnglishRose1320 · 29/01/2018 11:58

Tried my hardest to keep him awake and he fell asleep mid way through a maths question at 10, tried waking him at 11 to no joy. Going to try again now but I am running on empty and am really struggling to keep up this relentless routine.

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Original poster
EnglishRose1320 · 29/01/2018 12:42

Tried again, went for a firm and clear approach and he beat the crap out of me and has gone back to bed.

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ConfusedWife1234 · 29/01/2018 12:50

AIBU to ask how to react if somebody tells me their child has autism. I typically say that kids with autism are very smart/have special abilities and so on... and maybe they are a special mum to be given a special child. I am Christian and do believe our Lord has his reasons.
I mean I do not want to say that I am sorry or that I think it must be horrible for them.
Dh has ptsd and is short of hearing. I do not like when people pity us, because he has a lot of pride. I do have a lot of pride. I am very proud of him. Of course it is not really the same.

Original poster
EnglishRose1320 · 29/01/2018 13:04

I would say special abilities and I wouldn't say a special mum. We are just bog standard and have to deal with more. Well I am anyway and I can't deal with more

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ConfusedWife1234 · 29/01/2018 13:08

I see. Which reaction would you like/need most? Would you like people to ask how they can help? To learn about the desease?

Sirzy · 29/01/2018 13:22

I think a lot wokld depend on the context you were being told. But the best imo would be to ask how that impacts them personally as you can see from here everyone is different!

Original poster
EnglishRose1320 · 29/01/2018 13:27

Surzy sums it up well, it is different for every family so no one approach will work.

I've just had another useless cahms call, the service is shocking.

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Chouetted · 29/01/2018 13:39

Perhaps controversial, but I don't see why there needs to be a reaction. It's not cancer, no-one dies directly from autism.

Autistic people aren't necessarily smart, special or given of special abilities. And many autistic kids have autistic parents, so consoling them won't go down well - I'd be horrified to find out any child of mine was neurotypical as it would be much harder for me to bring them up.

Perhaps the most sensible response is to congratulate them on actually managed to get a diagnosis!

Evelynismycatsformerspyname · 29/01/2018 13:59

That sounds impossibly hard English. No ideas, just BrewCake Sad

Evelynismycatsformerspyname · 29/01/2018 14:01

I guess that if he saw a reason not to be nocturnal you could work with him. If he has no interest in returning to a sleep / wake pattern the rest of the house can cope with it sounds incredibly hard Sad

Sirzy · 29/01/2018 14:43

English hope you have some luck with CAMHs soon. Our local service are ol when you can get seen. I was told last week we still have another 3 months to wait followed by the advice to keep medicines and sharp objects away from him Hmm

geekymommy · 29/01/2018 14:47

Some of us autistic or suspected autistic parents know that being autistic does make life more difficult. Neither of my children seem to be autistic, and I'm relieved. I don't want them to go through what I did in school because of my lack of social skills. I was pretty miserable in school until about 11th grade (age 16-17).

Original poster
EnglishRose1320 · 29/01/2018 14:49

Cahms told me to call the police, been there, done that, if I call the police they will come and take over the restraining and then try and get hold of Cahms.
Evelyn- he wants to go to sleep at a normal time, he is terrified of seeing any medical professionals but asked me last night to call cahms and ask them for help, that's how desperate he is. But he only wants to in theory and I can't reason with him to get him to understand how to make the changes he needs to make.
I'm off to pick his brother up from school now and I'm going to have to leave him asleep. Feel like I have totally failed today.
Sirzy- it's horrible isn't it, waiting on tenterhooks the whole time. We finally got to the top of the list only to be told they will have a think and come back to us with a plan, they saw him once for half an hour, he screamed and head banged the whole time, it was back at the beginning of December, it better be a bloody good plan they are coming up with.

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Sirzy · 29/01/2018 14:54

It is, I made the mistake of accepting an “open discharge” from them which I have since found out simply means you can self refer back into the service rather than having to get Gp or pead to do it Hmm when we get seen this time it will be over my dead body they discharge him again open or not

gingerh4ir · 29/01/2018 14:57

AIBU to ask how to react if somebody tells me their child has autism. I typically say that kids with autism are very smart/have special abilities and so on... and maybe they are a special mum to be given a special child. I am Christian and do believe our Lord has his reasons.

is this for real? For starters, the majority of individuals with ASD are not highly intelligent but are much more likely to have some degree of learning difficulties. Most people with autism do not have a special talent and what the fuck re the Lord having a reason so give a parent a child with complex special needs. I can only hope that is a windup Shock.

My recommendation to you would be to just smile, walk away and say nothing. The fact that someone tells you their child has ASD, is nothing that requires any kind of reaction especially not this bigoted, irgnorant and religious nonsense.

Original poster
EnglishRose1320 · 29/01/2018 14:57

Sirzy- exactly the same happend to me when they sign posted me to the autism team, called them up a while later when things were really bad 'oh no he's not on our books anymore but you can re refer if you need to' it's taken this long to get back in the system, I'll be calling them every day if I have to, we are not going anyway until he actually gets some support this time.

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ConfusedWife1234 · 29/01/2018 16:36

Just smile, walk away and say nothing. Really yet? I do not have a kid with autism, but I have a dh with ptsd. Yep, I know very different... but if someone just smiled, walked away and said nothing I would wonder if I said something wrong, if they are shunning us now, if they think my hubby is crazy and so on. May be cultural thing, but in my culture it is considered very rude to just walk away and say nothing.

I did not want to offend you. I just ask what to do best and how should I learn this if I not ask.

ConfusedWife1234 · 29/01/2018 16:46

Apologies if I offended anyone. Was not my intend. Like I said I often do not know what to say and might say something stupid then.

coffeemachine · 29/01/2018 16:47

I have a DC with severe ASD and I would very much prefer no comment than patronising and factually incorrect nonsense that my child must be very bright (she has severe LDs) and that she must have a special skill (nope). And if someone would start talking about the Lord and that I must be the chosen one? Jeez, I'd lose it.

ConfusedWife1234 · 29/01/2018 16:59

Like I said I did not want to be offensive. Good we talked about it... it is just an idea that gives me strength. I think the things that happen in my life happen for a reason... I think without that belief I would feel pretty sad and lost... but that‘s just me...
So great to learn other people do not like to hear this.

taratill · 29/01/2018 17:18

OP right now I f**cking loath and detest autism. My high functioning (so supposedly mildly) autistic boy can't cope with life. Trying to self harm again. He can't communicate well enough to properly explain the triggers but I think they are sensory but because he has mental health issues and is under CAMHs he can't access OT because of budget cuts. I had no sleep again last night as I had to either safeguard him at home overnight or call an ambulance. He's 11. I have an 8 year old daughter who has seen and heard more than any child should have to.

Horrific.

Original poster
EnglishRose1320 · 29/01/2018 17:44

Taratill I completely sympathise, sounds like we are in very similar situations atm. DS is 12 and it's horrendous to watch/cope with all the time. Ds2 is 7 and I hate how much he has already had to deal with.
I really can't see an end in sight atm, I really can't see a way of doing 24 more hours like this yet alone weeks and weeks which seems likely.

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geekymommy · 29/01/2018 17:52

It might be good to react as if they had told you their kid is allergic to peanuts or hard of hearing or something like that. You aren't expected to say anything at the moment, but you should keep in mind that there are some expectations that you might have of kids that age that this kid won't meet. The kid is possibly going to not act like you expect in social situations, might react more strongly to some stimuli than you'd expect, or might tell you all about their latest obsession and not notice if you're bored by that conversation.

ObscuredbyFog · 29/01/2018 18:32

Confused Autism is not a disease. I have no idea how you've reached that conclusion, but please don't think of it like that and never say that within earshot of a parent who has an autistic child.

Definition of autism from the National Autistic Society
"Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them."

You've had some very good advice above, especially what geekymommy said.

Just don't say anything, you are being told because the parent wants you to know their child may not react like a NT child, that is all.
This might give you an idea of what autism is the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

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