To think no, autism is not a ‘gift’?

[RowRowYaStoat]

Does anyone else feel like this?
I’m feeling like the worlds worst parent right now. 12 year has been crying and kicking off since 7am this morning. After an awful few months , my patience is wearing thin.

Everything that goes wrong is my fault.
I honestly feels like he hates me (he doesn’t) but the way he talks to me, the way he shuts me out but expects me to fix everything.

The rigid thinking, total lack of compromise. The shouting, screaming.

The resistance to any change or expectation that he should do something himself.

The effect on siblings, the resentment they often feel. The fact my marriage is pushed to breaking point because the stress is immense.

And the lack of empathy from family and friends: “autism is a gift… embrace it !”.

I love my DS dearly. I’ll do anything to make him happy , but it’s just never enough. I always feel like he’s not happy and I worry how his perception of things is so different to the real situation.

And I lost my patience today.

Please tell me I’m not the only one to find this damned hard? Or am I just rubbish at this?

...there is a college local to me with courses for people with autism however speaking with another parent who's child goes there , all they have done lately is draw pictures and help pick up litter on the college grounds.and for me I'm sorry but that's not what I want for him...

Too right! Good for you!

It's definitely not a gift my 21 year old dd has Autism and it's hard work. She is high functioning. I also was a support worker for adults with autism. These individuals needed a lot of care but they are some of the most amazing people I have met and I miss them. But with my own dd I felt it a bit much mentally so left that job

@HeraInTheHereAndNow

Also... this.

DS and I went to River Island last week. He bought 7 (yes, SEVEN!) pairs of jeans. Same size. Same colour, exactly. When we came to pay, there were only 6 pairs so, had to order one pair for delivery. The lovely young SA said “Can I take your details? Is it Mrs?” “No” I smiled. “It’s “Mr” 😊. The SA presumed The online parcel would come to me. Even though DS had paid, using his own debit card.

Then later, in Next the SA made a comment about DS buying 4 shirts, all the same. I said “actually, it’s an autism thing”. “Awww!” she lamented and then addressed me, from then on.

I still think many people want to make disability “invisible”.

Years ago, my then boyfriend had an accident and was in a wheelchair. I’ll never forget someone in a cafe asking ME whether he took sugar in his tea. “Why don’t you ask him?” I snapped. I was younger then and less tolerant.

I hate this too. To sort this out (in a diplomatic but patronising way) I redirect their question to DS. As an example, Shop keeper says to me, "Would you like the orange juice or apple juice?". I turn to DS and say "DS would you like orange juice or apple juice?". It gets them every time and they feel a bit foolish.

I have three DC's, the oldest one is Autistic and the middle one is Dyslexic- which also comes with its unique challenges.

I love my oldest Autistic so much. If his life was cut short, I would kill myself. I cannot imagine my life without him in it. I would go to the ends of the earth to support him.

But I have to admit. Out of my children, his the one I worry about the most. I worry about when he gets older, how he would become, what happens if we are not around. We have our good days and our bad days- and our days can be very bad. Sometimes, I feel I would be a better mum if he didn't have this condition. He has huge anxiety issues and finds it difficult to regulate his emotions. Autism is expensive (any disabilities are to be honest). I have spent so much money on him (therapies, assessments, excursions) that I could have brought two houses by now. It is hard. What's also hard is dealing with the public, outsiders, schools, therapists, local authorities.

With all that being said. I try to remain positive. I have these bad thoughts and I move on very quickly. I have a child who needs me, more so even, through no fault of his own. I try to make time for myself, whether that's doing my hair, my job, meeting friends, gym as I don't want a breakdown.

When DS was diagnosed, I thought my life was over, until I taught him a skill and then I realised that Autism wasn't static, that with the right support and encouragement, he would learn new skills.

We only have one life and I try not to dwell too much as I have three kids to look after. I wasted so much time worrying about DS when he was younger (rather than enjoying him) and I truly regret that.

Do I think autism is a gift? No. And talk about it being a ‘superpower’ is a bit vomit inducing too. But I do not believe it’s a tragedy either, it’s simply a different way of thinking and being. I do however, like all other parents, think my son is a gift (to me), and autism is a part of him- he can’t change who he is, so I think it’s very unfair to harbour wishes that he was somehow a different version of himself. Some days he drives me nuts of course, but I’m very careful to make sure that he knows that we completely accept him, and that we wouldn’t change him for the world. How can I expect him to grow up with good self-esteem and a positive self image otherwise? ..I also don’t have a problem with Autistic advocates either- autistic people need positive aspirational role models like everyone else -if it’s not your cup of tea, don’t follow them on Twitter!

I am higher functioning (I know it is a term a lot of autistics disapprove of) but still struggle everyday. I live independently but still struggle with day to day basic life skills and am unable to hold a job.

You sound a lot like my brother. He learned young to observe and to “fit in” (in his 50s, and our parents are shit by even 60s standards of accepting his different ways of thinking). There are a lot of very admirable traits to him that to me seem to be as a result of being on the spectrum. He’s one of the most genuinely honest, ethical people I’ve ever known. But I’d never call it a gift, it’s been the source of a lifelong sense of aloneness for him (the shit parents didn’t help on that front). I wouldn’t change him on the one hand, on the other I wish this sadness he has could be taken away.

OP, I hear you, it’s ok to feel tired and frustrated by it. There’s a little lad in the house backing onto our garden, he’s on the trampoline daily and we can hear his vocalisations and when he starts having meltdowns. No problem for us, his parents are amazingly patient and calm in handling it. But we often wonder how the hell they cope, and how they keep it together. And we can hear his brother’s tone of resignation at times too. It’s ok to feel how you do when you’re dealing with difficult day after difficult day. It’s not a gift, and people say some really stupid stuff sometimes.

I worry A LOT about my son's future, especially after I die. He's very vulnerable, all the more so because he doesn't appear so or believe he is.

@MrsSnitchnose

So grateful for this thread. The amount of times I've been shouted down, on what are supposed to be support groups, for daring to say I would get rid of my DS's autism in a heartbeat if I could is horrible and made me feel like there was something wrong with me.

In my experience, autism mas been a curse. My DS (13) was diagnosed age 6, along with ADHD which he's medicated for. For 13 long years now it's been one constant struggle which has worn me down.

He's high functioning and very capable with things like dealing with increased responsiblity. He's perfectly able to get himself to school on the bus and seems to be making friends, but the battles are daily and his social skills and self esteem are low.

I'm confident he will be able to live an independant life, moving out of home and managing a job, but he has the dream of joining the police. If he'll be able to cope with that, I have my doubts and it will probably crush him if he can't deal with the demands of a career like that.

For us, it hasn't been a gift, just an extra weight to carry and probably why I detest being a mum so much.

It's been enlightening to read what others have said on this thread, it makes me feel like I'm not as alone as I thought

Haven't read the full thread so this might've been said but I follow the National Police Autism Association on Twitter. Might be worth a chat with them about it. Lots of autistic people do work for the police.

www.npaa.org.uk/contact/

Autism is such a broad spectrum of impairment, and the common feature that diagnosis shares is the recognition of impairment of ordinary life in certain fields.

I grew up with a relative with severe learning difficulties that was completely unable to live independently. DS has ASD and is very intelligent in some ways, with blind spots in other ways. He's the type that currently masks through the education system, but it's a fragile line to walk. His needs are very different to my relative's needs, but there are autistic people with that level of impairment. Discussing autism is harder for a lack of agreed vocabulary. My battles are often very different to the battles of a parent whose child has extremely limited independence and expressive skills.

DS has got great potential, but the flip side of those "gifts" has a dear cost. I love him and I wouldn't change who he fundamentally is, but if I had a magic wand, I would ease that frustration, and anxiety and give him a higher emotional capacity to cope with the little things and dial down some of that sensory intensity.

On a bad day when it's like living with Victor Meldrew blended with Kevin the Teenager, I would not take glib "gift" comments well!

can you ask you r mate where she got this gift from? I have three gifts I would like to send back please.

Aww OP your friend sounds like a selfish piece of work.

Having a child with SEN or disability, isn’t a ‘gift’, it simply makes their life more difficult, than it would have otherwise been, in most cases.

Yes perhaps some would say it’s a gift, in the same way that some would say dyslexia is a gift, if they must be really creative....🙄 well no, not all children that have dyslexia are creative and their time at school/work is subsequently harder because of the difficulties.

I know people will try to see the positive but anyone that knows someone with ASD must have an idea of how difficult it can be for both child and parent.

To add- it’s the constant worrying about children that are not NT. that’s the kind of stress parents are under, again not really a gift...

@secular39

...there is a college local to me with courses for people with autism however speaking with another parent who's child goes there , all they have done lately is draw pictures and help pick up litter on the college grounds.and for me I'm sorry but that's not what I want for him...

Too right! Good for you!

That is interesting. A friend with an autistic son said he went for a while to a 'specialist' college which had incredibly low expectations. It led to him getting so depressed thinking his life was over and would never amount to anything. He moved to a new college and has been really thriving there in an NT environment on a mainstream course. I wonder if it's the same place?

for all of the supportive and understanding comments; I often feel like an ogre when these days hit

@FrankensteinIsTheMonster

Thanks for the elaboration Lotus.

I do realise it's unlikely that someone who's genuinely intending to murder her child is posing about it on MN I also understand that when under great stress, thoughts go through your head that you would never carry out. However, given that we live in a society where the murder of disabled children by their parents is frequently treated as understandable, forgiveable, etc., and disabled people's lives are often treated as less valuable, I think it's important to avoid normalising the idea of fantasising about murdering your disabled child. It's deeply troubling that the poster has these thoughts and feels no compunction about broadcasting them, and a sign that our society is failing disabled people and their carers.

It was a joke. I would never have frightened the lobsters.

Shame it wasn't funny.

@FrankensteinIsTheMonster

Shame it wasn't funny.

I thought it was quite funny. We cant all have the same sense of humour. Obviously we are not allowed to beat or murder our children, but sometimes people joke about wanting to. Its no big deal. Joking is quite a nice way of processing frustration and less than ideal moments.

Ive joked about throttling my children. Beating them with a stick/wet fish. Making them walk the plank. Sending them to boarding school/orphanage.

Its character building.

This thread is supposed to be supportive of a parent who is struggling with parenting their ASD child.

Myself and others have posted in support, sharing fragments of our lives. Some of us are autistic ourselves and on this thread we are all acknowledging the difficulties we feel, for ourselves and our children. As well as the love we have for our children.

Some times those struggles feel overwhelming, and it would be a shame if posters are condemned for their honesty. I doubt there was any intentional malice, so please do not find offense where none is intended.

FrankensteinIsTheMonster
We are posting about our lives and experiences, not commenting on your life.

We cannot walk in each others' shoes, we can only share our feelings, looking for a bit of understanding amongst Internet strangers.

Not read the thread....

My DDs ASD is not a ‘curse’ but not a ‘gift’ either. And anyone who’s saying this can come manage her kids meltdown and see how gifted she is then.

They can also experience the heartache when she struggling with some very basic education skills (fuck you handwriting) and is struggling with anxiety that means she literally has to hide.

Yes I know the world around her has to make adjustments, but she lives in the world we have right now. And it’s bloody hard.

YANBU and you are not alone.

For some with milder effects of autism, or high functioning or whatever the current correct term is then great.

For many and particularly those with more severe autism, many non verbal, challenging behaviour, unable to live independently, need carers to help with day to day living that many take for granted, then it is shit. I know parents with children but young and adult children that would if they could get rid of autism because it makes their life shit

🙄

I am also slightly worried about the trend to be very openly critical of parents of autistic kids. As if they are abusing their kids. Of course there will be some parents who do abuse their children, but across ALL of society their a child abusers. The majority of parents are just trying their hardest and love their kids so much. But it’s also ok to say ‘this is hard’ while also doing everything to care for their child.

@PandaLady

I have experienced both sides: ds2 diagnosed at 2.5yrs, special school, anxious about everything, learning disabled.

Ds1 just about to start his assessment for ASD at 13. Will get a diagnosis, had a nervous breakdown in yr 6, on sertraline since he was 12, socially anxious but happy, funny and breathtakingly clever.

I would love to take Autism away from ds2 but with ds1, it helps him focus on his interests (science and maths) and with our support, he does really well.

Two very different children.

This

100%

FrankinsteinIsTheMonster I'm really, really glad that you've explained that it's not ok to murder our autistic kids, I understand that now thanks to you, but I have another question ...

Is it ever ok to murder our not autistic kids? You didn't address this at all so now we just don't know!