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?

@BlatantlyNameChanged

I was once told that God only gives special children to special parents

I had, from an earnest churchgoer, "what have you learned from having name?" " That I don't much like having a disabled child" That stopped her in her tracks.

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.

My dd has autism and severe learning disabilities, it's not a gift and I'm not a "special mummy doing and fantastic " job, I'm hanging by a thread and have been for 15 years. If I could take away her disability I would in a heartbeat, the future for her is terrifying.
I'm sick of being asked what her special 'gifts' are as if she's some savant, I just say o her gift, well she can fly, and walk away, it's soul destroying.

“They’re usually really gifted at something aren’t they?”
“Well we’re all a bit autistic, aren’t we?”

If I had a pound for every time I’ve heard those peaches...

I don't consider my autism a gift and neither does my autistic dd. Life is really bloody hard for her and she struggles every day.

I feel very conflicted.

I have a son with MLD and ASD, he is ten.

There are a lot of challenges but our own understanding of him is better now.

He attends a generic special school and will be going to a secondary school that I suspect will not meet his academic potential but will be good at supporting his emotional health. It was a huge draining fight to compel the LA to acknowledge that mainstream wasn't for him.

I actually do feel quite hopeful for his future - I worry for his mental health as his rigidity means it's hard to help when things aren't as hoped for / expected / exactly flawlessly fair.

Our particular situation is ( fingers crossed) mainly positive.

I feel huge empathy to the many parents at our school for whom things are much much harder - day in, day out with a very frightening future

@rosie39forever

My dd has autism and severe learning disabilities, it's not a gift and I'm not a "special mummy doing and fantastic " job, I'm hanging by a thread and have been for 15 years. If I could take away her disability I would in a heartbeat, the future for her is terrifying. I'm sick of being asked what her special 'gifts' are as if she's some savant, I just say o her gift, well she can fly, and walk away, it's soul destroying.

Yes that's so annoying and patronising,when people tell you,you are amazing for doing what you do for your child and they couldn't do it ,I mean what's the alternative ? People who are not living it and don't get if and they have no idea how they would cope in the same situation.

It's absolutely fucking tone deaf of someone with NT children to tell a parent of an autistic child that it's a gift and to embrace it. She is not your friend OP - find some better ones.

I do have fellow parents of autistic children who can be a bit woo about their kids' autism but it tends to be an occasional thing - when everything is going well rather than those days/weeks/months when their anxiety is off the scale and everything is WRONG.

My child would prefer not to be autistic and actually his perspective is a lot more important than mine.

I suspect the only people who say their autism is a gift are self-diagnosed.

'Einstein was autistic', 'Georgia o Keefe was autistic' etc etc. Oh it's so nice they feel safe enough around you to hit you, threaten you, swear at you and call you names.

I do wonder about the general levels of cognitive empathy in the entire population because a lot of people are extremely bad at it, and use phrases like 'it's a gift' to shut you down.

@Summersnake

I tell you what fucks me off more than anything Is woman with a child with Autism , Calling themselves Autism moms Yuk no If you have Autism yourself,then yes call yourself an autism mom Otherwise ,no ,your not an Autism mom

I do agree with this. I find the term cringey.

Lovely relative has it. He's very bright and warm and funny but has told us bluntly that all the autism bit is a massive negative thing to him. Glad he was able to be honest with us.

If anybody thinks autism is a gift, they are welcome to come and live in my house for a week.

They can be screamed awake every morning. They can be told that they're fucking stupid a number of times every day. They can deal with the scratching paint off doorframes and digging holes in the plaster. They can deal with the countless meltdowns and tantrums. They can deal with trying to help an autistic child with sensory issues cope with periods. They can deal with the utter dread knowing DD will be home from school soon and the shit will hit the fan the moment she opens the door. They can deal with the utter mental exhaustion of NEVER EVER getting a break.

Yeah, like fuck it's a gift!

I am trained to work with children with additional needs and cared for 2 younger siblings with autism. My niece has autism and I look after her a few times a week. She is the loveliest child I've ever met but she requires a lot of extra time, effort and thought. She is deeply unhappy, her parents struggle to care for her and her doctors have been useless. We adore her, we wouldn't change her for the world- but it is not a gift.

I'm disabled and chronically ill, apparently that's a gift too. What sort of ableist fucker thinks we see it as a gift?!
Seeing children so desperately in need of help but unable to communicate it, screaming because they can't communicate their feelings and ignoring broken bones because they can't explain the pain is NOT a gift.

@mrwalkensir

Lovely relative has it. He's very bright and warm and funny but has told us bluntly that all the autism bit is a massive negative thing to him. Glad he was able to be honest with us.

I’m a bit grouchy right now but I cynically go at you using the term “lovely relative” (my emphasis) when “relative” would have sufficed. It’s the type of thing people do when talking about people with disabilities and they’re virtue signally by trying to show they’re cool and down with it. Your next sentence of what he’s like reads genuinely and sincerely and he does sound lovely. I’m not questioning his loveliness, just how it’s a common pattern for someone to make a point of describing a disabled person as lovely/gorgeous in a sentence when they wouldn’t use that term about an able-bodied/NT person.

@doadeer

My partner had an argument at work with a colleague who has decided he is the spokesperson for autism internally, he was diagnosed at 39, holds a senior position in the company and he was highly critical of patents of ASD children saying that they don't embrace it enough and celebrate it.

Our son is 2.5 and has "severe" autism. We worry so much about the future and how he will cope... He's a beautiful little boy but it's difficult every day and we don't know if he will ever talk or understand basic instructions. A friend has a 12 year old ASD child in nappies, non verbal and needs a pushchair. It's so easy to say these statements about it being a gift with very little understanding.

Absolutely @doadeer , you are so right. Reminds me of this: www.google.com/amp/s/amp.theguardian.com/commentisfree/2019/aug/26/autism-neurodiversity-severe

It's also difficult as families in our position can no longer say "severe" or "low functioning" and so when they are compared as being generally "on the spectrum" with the likes of Steve Jobs, Einstein etc I find that really hard. I'm not saying "higher functioning"/Asperger's/lower social care needs autistic people don't suffer, but if I'm honest, it's problematic to compare to those who are non verbal, in nappies and might never get any kind of job ever.

No it’s not a gift.

But I also wish people consider our feelings when discussing us. Though it’s not a gift, it is not always all negative. Some of us can be nice at times. But the only references on MN seem to be about us being so hard to live with. It’s quite hard to read at times. I wonder if my parents regret me being born? Or would have aborted me if they’d known I was autistic?

By then again I’ve often thought the world would be better without me so maybe I’m being unfair to suggest others can’t think that of me too.

@Scautish

No it’s not a gift.

But I also wish people consider our feelings when discussing us. Though it’s not a gift, it is not always all negative. Some of us can be nice at times. But the only references on MN seem to be about us being so hard to live with. It’s quite hard to read at times. I wonder if my parents regret me being born? Or would have aborted me if they’d known I was autistic?

By then again I’ve often thought the world would be better without me so maybe I’m being unfair to suggest others can’t think that of me too.

I'm sorry if you find this thread hurtful I adore my son. He is the most amazing human being and my life would be so much poorer without him in it. It's painful to see him struggle though and I wish I could wave a magic wand and take away his anxiety.

But I absolutely do not wish he'd never been born.

Many parents post on this forum about their struggles with parenting, whether their children are NT or neurodiverse. We don't talk about the good bits because we don't need support with those things.

It's not personal to you.

Many parents post on this forum about their struggles with parenting, whether their children are NT or neurodiverse. We don't talk about the good bits because we don't need support with those things.

TBF there are also an awful lot of MNers with autism - many of them also mothers of DC with autism - and the constant sweary, vicious negativity about autism is a bit much.

@Scautish it’s absolutely not all about the negatives , but the negatives are HARD when living with someone with such difficulties day in and day out. Like a pp said , nobody needs support with the good stuff.

I mean this kindly but you say “us” which is quite generic and your difficulties aren’t going to be the same as other people with autism and their difficulties.

I’ve had quite a trying day with our DS and our elderly neighbours have already been around to complain about the noise (shouting and screaming) which puts even more pressure on us as parents.

It doesn’t mean I love him less ; I just wish life wasn’t so hard for him. The frustration I feel is not because of him, it’s because I have no way to help him. I also have his siblings to consider. It’s not easy for them either.

I mean this kindly but you say “us” which is quite generic and your difficulties aren’t going to be the same as other people with autism and their difficulties.

Maybe everyone should remember that the spectrum is a spectrum?

Indeed ,if you have met one person with autism, you have met one person with autism.

I adore my boys but I cannot and will not pretend that life with them is all warm and fuzzy for the sake of other people. Lockdown has done a real number on their mental health (and ds1's has always been fragile) and they hate each other. Always have done. The tic disorder that Ds2 has developed is challenging enough for me and dh. While Ds2 spends an entire weekend shrieking, poor Ds1 is struggling to hold it all in. He is so desperate not to lose his shit that he has pretty much entirely opted out of day to day life. I refuse to be positive about that so it doesn't offend others.

Ds1 is one autistic person. Ds2 is a very different autistic person. They are the people I live with, care about and worry about. The complex feelings I have about life with my boys says absolutely nothing about people I have never met.

@Scautish

No it’s not a gift.

But I also wish people consider our feelings when discussing us. Though it’s not a gift, it is not always all negative. Some of us can be nice at times. But the only references on MN seem to be about us being so hard to live with. It’s quite hard to read at times. I wonder if my parents regret me being born? Or would have aborted me if they’d known I was autistic?

By then again I’ve often thought the world would be better without me so maybe I’m being unfair to suggest others can’t think that of me too.

But we aren’t talking about an “us”. We are talking about our individual children.

I know plenty of people with autistic children who aren’t diagnosed until late in school, or adults who aren’t diagnosed until their 40s - clearly there’s little in common with my boys who were diagnosed at 2. I have no idea if my boys will ever be able to go on the Internet and engage in a discussion about autism, so those who can’t aren’t really represented in any discussion (especially when parents are told to shut up).

I can’t think of any other condition that can cause such significant impairments yet some people insist you can’t call it a disability. It’s great that some people don’t feel their autism holds them back but as I say they would likely feel different if they were unable to communicate, were still in nappies and spent their whole lives either living at home or in residential care.

It is a disability

You shouldn’t get a diagnosis unless it impairs your life in a daily basis.

And sorry I said us. It’s just the thread was about autism so I took it to be generic. I am not trying to mimimise your experiences as parents. We are hard work.