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?

[quote danni0509]@TheCuddy lobster tank post made me laugh!

We are going to the aquarium Sunday and ds said to me can I swim in the tank with the sharks? I said to Dh if he carries his behaviour on he will be getting his wish 😂[/quote]
Resist the urge if there's witnesses @danni0509 Plus you'll have to eat your phone now as this post proves it was premeditated.
Hope you all have a grand day out

@KOKOagainandagain

DS is high functioning in that he has average cognitive ability. But low functioning if we consider impact on every day life. He is high functioning because he can pass for NT. But he has no independent life skills and is not in education work or training. He still says (at 20) he will live with me until I die, and then he will die. This makes me more sad than I can express.

I have this thought. Once my parents are gone I will probably end up killing myself. To me it’s quite inevitable.

I suspect autism, but more ADD, so I would call myself neirodiverse. Diagnosis for an adult would be hard if not impossible to get in my country. I really don't know where my "arrogance" comes from, but - no, I would not want to trade my brain and inner world for being NT. The thought of it makes me shudder. And I do struggle - with socialisation (have accepted that I dont feel good in social situations with multiple people, struggle with job colleges, run away from jobs after a year or two, don't understand many jokes, can be naive etc.), will not reach my intellectual potential/have career, I have anxiety, trouble staying organized, on top of house work and other things. So what? Thats part of MY life, my journey. Maybe it comes down to childhood - if you have that one person who understands and accepts you, you feel worthy for the rest of your life, come what may. I was lucky to have that. Be that for your children! And culture is also important - maybe it's british high expectations of children that put additional pressure on parents with SN kids. This thread was bit grimm. Especially so many autistics feeling sad and guilty about important part of their personality. And so many are brussing aside streinghts of their children to be concentrating on negatives. Your autistic child mybe don't want to act on the stage or have active social life, but there are other things that makes them happy. If you put value in those, whole world view changes. Also it's hard to understand why, from many comorbid conditions like epilepsy and learning disability, autism is always sigled out as root of evil.

@user1478172746

I suspect autism, but more ADD, so I would call myself neirodiverse. Diagnosis for an adult would be hard if not impossible to get in my country. I really don't know where my "arrogance" comes from, but - no, I would not want to trade my brain and inner world for being NT. The thought of it makes me shudder. And I do struggle - with socialisation (have accepted that I dont feel good in social situations with multiple people, struggle with job colleges, run away from jobs after a year or two, don't understand many jokes, can be naive etc.), will not reach my intellectual potential/have career, I have anxiety, trouble staying organized, on top of house work and other things. So what? Thats part of MY life, my journey. Maybe it comes down to childhood - if you have that one person who understands and accepts you, you feel worthy for the rest of your life, come what may. I was lucky to have that. Be that for your children! And culture is also important - maybe it's british high expectations of children that put additional pressure on parents with SN kids. This thread was bit grimm. Especially so many autistics feeling sad and guilty about important part of their personality. And so many are brussing aside streinghts of their children to be concentrating on negatives. Your autistic child mybe don't want to act on the stage or have active social life, but there are other things that makes them happy. If you put value in those, whole world view changes. Also it's hard to understand why, from many comorbid conditions like epilepsy and learning disability, autism is always sigled out as root of evil.

What about those severly impacted children ? And adults that often get ignored by the "autistic community " because it doesn't fit in with their narrow view of autism ,it's hard to see strengths when your non verbal child is biting and scratching you and can't tell you why they are upset .

I don’t think comparing the experiences of someone who has reached adulthood and suspects they may be neurodiverse with the experience of those who as children are impacted in every aspect of life every day is helpful.

It certainly doesn’t come down to parental love or understanding! I don’t know any of the parents on this thread personally but I have seen enough posted by many of them to know they unconditionally love their children and fight constantly to get that what they need, including things many parents will just take for granted.

@RowRowYaStoat

Autism is a gift was said by a friend when I texted saying I was having a tough day. She breezily replied ‘embrace it’ and then changed the subject to how she’s just been having a fab time with her kids

That's very callous.

Some people who are autistic do view their autism as a gift because of a unique way of thinking.

But autism is just so variable and there is as much diversity as there is in any group of people.

It all depends on the individual, how it impacts them and how they frame it in their minds. For some people I am sure they wish they were not autistic and it's certainly not always easy for parents and other family.

"It's hard to see strengths when your non verbal child is biting and scratching you and can't tell you why they are upset ."

I sometimes see people say that is because of the learning disability and not the autism which shows a lack of understanding of the combination of difficulties.
If I could 'remove' the autism and my son just had a learning disability he would have less difficulties so it isn't just about learning disability. A lot of his issues are sensory issues and are internal sensory issues, not ones I can control externally.

@Sockwomble

"It's hard to see strengths when your non verbal child is biting and scratching you and can't tell you why they are upset ."

I sometimes see people say that is because of the learning disability and not the autism which shows a lack of understanding of the combination of difficulties.
If I could 'remove' the autism and my son just had a learning disability he would have less difficulties so it isn't just about learning disability. A lot of his issues are sensory issues and are internal sensory issues, not ones I can control externally.

Those people are wrong. This whole “if a child with autism is delayed it’s because they have learning disabilities” is a really damaging narrative. It’s how LAs end up placing non verbal autistic children in schools for profound and multiple learning disabilities which is nearly what happened to my children. I had to go to tribunal to fight for an ASD specialist school, the fight was horrific but it was worth it in the end because they are thriving where they are now.

The OFSTED report for the school the LA wanted to name said that one particularly able secondary age pupil could spell breakfast and the rest could spell a range of four letter words. One of my twins can already do those things - he’s 4.

Most children learn through observation of those around them and a desire to emulate what they see, and get an inherent reward from participating in certain tasks that help them learn by doing. It’s not surprising that where the social and communication aspects of autism are especially severe, a child is significantly impaired and delayed in those areas. It doesn’t mean they are intellectually impaired.

And so many are brussing aside streinghts of their children to be concentrating on negatives. Your autistic child mybe don't want to act on the stage or have active social life, but there are other things that makes them happy. If you put value in those, whole world view changes. Also it's hard to understand why, from many comorbid conditions like epilepsy and learning disability, autism is always sigled out as root of evil.

You have not one speck of a clue what you’re talking about. Do you live a life where you can’t communicate your needs in any way, where you can’t live independently, where you can’t work at all, where you are still in nappies?

Autism is not “the root of all evil” but it has made life extremely difficult for my children. I couldn’t give a shit that my children don’t want to act or have lots of friends - I want them to be able to communicate what is happening to them and what they are thinking, I want them to have a full life of things they enjoy. I want them to enjoy things full stop. You’re talking about a situation that’s completely different to your own and others in a similar situation and you clearly have absolutely no understanding of what this is like for these autistic people or those who care and advocate for them.

I have worked my arse off trying to access all the right support for my children. To try and make sure they have the best possible outcomes so they have the best possible life. The insinuation that parents like me are moaning because they might not want an active social life is staggeringly offensive.

And you know what? I’m pretty convinced I am autistic and / or have ADHD myself - I’ve struggled with a lot of things that have made my life more difficult. But I’ve still managed to get a degree, have jobs, get married so my own neurological status is really not relevant when discussing children who are impacted in ways that prevent them from achieving these things.

My 7yo DS has asd - would probably have been given an aspergers diagnosis if they still did so. He’s bright, funny, has made friends at mainstream school but this all comes at a cost to him. He masks like crazy all day, then when he comes home it’s just like the shaken bottle of pop analogy. It all comes rushing out and he can spend most of the evening raging.

If I could change one thing, even if I couldn’t take away his autism it would be to stop him raging at himself. He rages because he can’t do everything that his peers can. He rages because he struggles with reading and writing. He rages because he knows he is “different” (his word) to his friends; he can’t cope with loud noises; he needs movement breaks when they don’t; he keeps getting asked about his interventions by the new kid in his class and DS doesn’t like that.

It’s awful seeing your child hitting himself in the head because he hates his brain. He’s 7 and he’s said he wants to be dead so his brain will be quiet. If I could take that away from him you bet your arse I would.

"It’s how LAs end up placing non verbal autistic children in schools for profound and multiple learning disabilities which is nearly what happened to my children. I had to go to tribunal to fight for an ASD specialist school, the fight was horrific but it was worth it in the end because they are thriving where they are now."

PMLD schools are inappropriate placements for a child with autism whether or not they have a learning disability. My son (teenager) has a significant learning disability as well as being profoundly autistic but still needs the ASC experienced staff and low arousal environment of an ASC school.
LAs push the alternative because they are usually LA schools and so cheaper but they are the wrong environment for a child with autism.

Your autistic child mybe don't want to act on the stage or have active social life, but there are other things that makes them happy. If you put value in those, whole world view changes.

Yeah, it's not really about that. It's more a case of what it takes to get through the fucking day. That applies to my autistic children and myself. I'm so sick of people suggesting autism isn't so bad if the person is 'happy' - have you any idea at all how bloody difficult life is, day to day, just getting though? Yeah, I might 'look' happy. My children may 'look' happy but by fuck I can tell you now the minute any of us are expected to do something that a NT person would do without thought or question there is no 'happy' about it.

Your idea that we need to place value on other things to change our view is typical of someone with absolutely no understanding at all. I do not need to change my view. I need people like you to understand that we can't just make happy to suit he sue we have lifelong difficulties/differences that's dictate its not quite so fucking simple.

@Sockwomble

"It’s how LAs end up placing non verbal autistic children in schools for profound and multiple learning disabilities which is nearly what happened to my children. I had to go to tribunal to fight for an ASD specialist school, the fight was horrific but it was worth it in the end because they are thriving where they are now."

PMLD schools are inappropriate placements for a child with autism whether or not they have a learning disability. My son (teenager) has a significant learning disability as well as being profoundly autistic but still needs the ASC experienced staff and low arousal environment of an ASC school.
LAs push the alternative because they are usually LA schools and so cheaper but they are the wrong environment for a child with autism.

Absolutely agree! The head for the school said in our hearings that the staff get an hour of “autism awareness” training PER YEAR, and yet they have the nerve to list ASD amongst their admissions criteria.

Their own admissions policy states that severe learning disabilities must be the child’s primary need, but they still spent tens of thousands of pounds to take it all the way to hearings. Absolutely disgraceful. And when I proved that the cost difference between the placements was almost zero once all the provisions were included, they lied about transport and added on a £25k a year transport cost to our school of choice (when in fact they actually travel on a bus that was already passing our road, for £0 marginal cost).

In our case I don’t think it was even about the money - I think they wanted two children where ASD is the primary need in the school, so that it set an easy precedent for others coming later.

There is so much fighting just to get the basics of education and the sad thing is when things are right it does allow children to thrive.

At the start of year 3 Ds was just about hanging on in mainstream, he had an ehcp but it was wooly and pointless. After a lot of fighting the LA finally agreed to fund full time 1-1 which meant me and the school could really get in place what he needed. He is now in year 6 and most days he stays in the class all day (with 1-1) and is academically at the expected level for his age. But I had to fight tooth and nail to get what is needed in place.

He moves to secondary in September, no specialist schools locally are any good for him, no mainstream have specialist units, thankfully we have one mainstream that from what we have heard so far will be great for him. If it’s not we have literally no other options other than home achool because provision is so poor

As foster carers we occasionally do respite care for disabled children and without exception have found teens with autism the hardest gig of all.

I remember when we returned one young man to his mum and I was pale with exhaustion. And I told her I didn’t know how she coped (I shouldn’t have said that but I was she’ll shocked), and she hugged me and thanked me for expressing it. She was just so fucking sick and tired of being expected to be some saintly capable mother.

I am dreading the teen stage with our twins. I desperately hope they have more understanding by then.

I saw a post in a support group from a mum who was absolutely desperate - her teenage son was engaging in very painful and dangerous (to himself) sexual sensory seeking behaviour. He’d been in hospital multiple times, including surgery to remove a sharp object from his body which damaged him, and didn’t have the understanding needed to reason with him or prevent it.

I watched in shock as a load of eloquent, independently-living adults laid into her for “kink shaming” and started banging on about how autistic people have as much right to experiment sexually as NT people.

Absolutely unbelievable. This poor woman was dealing with a situation where her son is frequently injuring himself and behaving sexually in front of others, and she was berated for it.

Indeed. It was very eye opening. A lot of people talking about their sexual preferences (which they had the understanding to be able to risk assess and perform safely if they chose).

I see this about general stimming a lot - about how those evil “autism moms” are so cruel because they try to stop their children from stimming, just because they don’t want their children to act “weird”. Err no, I don’t want my child to choke to death or cause brain damage slamming his head into a wall, or get crushed climbing a piece of furniture.

It’s like a reasonable dialogues isn’t possible because we are not talking about the same things, even though the words are the same.

I suspect autism, but more ADD, so I would call myself neirodiverse. Diagnosis for an adult would be hard if not impossible to get in my country.

You said you would struggle to get a diagnosis for ADHD in your country, but in the nicest way possible, you would struggle to get a psychiatrist to diagnose you with ADHD in this country too if your attitude is "so what?"

It's really not being disorganised in the home or struggling with jobs or large social situations. That is not enough to get a diagnosis. You have to prove (with added written accounts from other people to confirm) that you are seriously impacted, detrimentally, in at least two areas of your life. You have to prove you are disabled by it, basically. And the psychiatrist has to rule out that "feeling awkward in social situations" isn't down to naturally being introverted, or anxiety etc. Or being unable to keep your house organised isn't down to depression. Or a mood disorder.

The fact you are saying "so what?" and that you're apparently putting this down to having a good childhood doesn't suggest you feel you have a problem with it. And if you do not feel like you have a problem with it then you don't fit the criteria for diagnosis. It's as simple as that. You can call yourself neurodiverse if you want (I've already made my point about that movement) and you can say you suspect ADHD-PI (which you called ADD) but if it's not an actual problem for you then it's the equivalent of someone who likes to clean referring to themselves as OCD.

I could be totally wrong here in which case, I'm sorry, but your post has an air of "everyone has a little autism / adhd / ocd / depression". No. If you only had a "little" then you would not have it.

Your post is also pretty offensive by suggesting that it's down to something in your childhood. I can assure you, my mum understood me and accepted me. She is a specialist in childhood development and understood 100X better than most. That doesn't magically give me the ability to stop and think before I act, or to control my behaviour so it's based on logic and foresight rather than emotion and impulse. And this could never, and has never, been solved by anything other than medication. And I'm extremely glad for that because when I wasn't medicated I would frequently ruin parts of my life and get into so many dangerous situations. Why would I accept and embrace that when I don't have to? If people were expected to embrace it there would not be drugs available to treat it!

And for people with autism there is no medication, and therefore no choice. Why exactly are they expected to embrace it and be happy about it?

And your point about British high expectations is laughable. Have you read any of the posts on this thread? Do you really think some of those disabilities are down to having too high expectations?

As I said in my initial post: people should be free to celebrate who they are and the victories they achieve, not feel pressured to celebrate having "neurodiversity". People shouldn't be made to feel ashamed, but neither should they be pressured into celebrating something that causes them hardship and suffering.

@baaaaal

Wonderful post.

And your point about British high expectations is laughable. Have you read any of the posts on this thread? Do you really think some of those disabilities are down to having too high expectations?

Yes I definitely have too high expectations for my twins. I would like DT1 to be able to make more sounds than “ga”. I would like DT2 to be able to play with a toy that would help his develop fine motor skills - any toy really, even for 10 seconds. I would like both to be able to use cutlery, or understand the concept of weeing and recognise the sensation so I could start to toilet train them.

Poor children, crushed under the weight of my high expectations.

@baaaaal
Very neatly put

@baaaaal excellent post.

Well said @baaaaal

I've heard the shite phrase "Only special parents get special kids from God" far too many times! My kid had a brain bleed in NICU so has a mix of severe cerebral palsy, autism, bipolar. He's non verbal and inflexible, stubborn and will never be independent.