AIBU for how i feel about my sons autism.

[saffkey1]

My DS is 5 and is severely autistic.I have two younger children with my DH.AIBU to not,as everyone else suggests i should,be really ott positive about my child being autistic .I have tried,but I find alot of people say shitty things like ‘i wouldnt change a thing’ when i really would.I love my son dearly and i will support him until i die but if i could give him a tablet i would.I just worry so much about him,about his life being hard.I also get incredibly jealous of those with ‘normal’ 5 year olds who complain about them.Im not sure whether im being awful for feeling this way.

I've often wondered how much a "cure" would change someone. It's just idle speculation of course, but if I didn't have sensory issues, and could understand people and enjoy the world a bit better, wouldn't I still be "me"? Just a happier "best" version of me? Or would I be an unrecognisable stranger?

(And by "change someone" I mean change the personality rather than obviously changing someone's life!)

saffkey1 thanks for this thread, it really has helped, thought I was the only one. As a parent you want to make life easy and good for your child, taking away their anxieties and difficulties are part of it. That includes their Autism and SN. It is that, which makes their lives hard and difficult, I would not wish that on anyone.

YANBU
My DD has ADHD. We cope with it because we have to but I really wish she didn't have it. Life is hard enough as it is without extra challenges.
It is perfectly understandable that you would wish your son not to have to face extra difficulties.

Thank you for this thread, I have found my people, I'm currently relearning the ropes with a NT 2 year old as well as 5 year old DS (GDD, Hypermobilty and suspected ASD) and fucking hell its hard, some days I want to curl up in a ball and just cry. Those are the days I ring my mother.

I think most people with a child who has special needs suffer from what if/if only syndrome - meaning that if only they could do x or what if I had done/not done y. It's a natural reaction. You want what is best for your child and anything that may make their life difficult is a hard pill to swallow. The fact that your child has a mother who is so worried and concerned is a good thing in my book, rather that than a parent who couldn't care less. One of my children had a severe speech delay and couldn't speak relatively intelligibly until he was seven years old. The first time he said "I love you" I cried which made him cry. I used to hate listening to parents complain about how their children wouldn't keep quiet - at that stage I would have given anything to hear mine rabbit on about Lego, school, etc. Keep your chin up, you are not wrong/jealous to feel the way you do.

I know it’s not the same as my son doesn’t have autism but my 7 year old has global development delay... but he’s so challenging, around 3 years behind so he struggles a lot, repetitive speech and relies on adult attention not matter who it is. He’s certainly hard work and it’s so draining especially when he has a very very short attention span.
I worry about his future so much, worried how he will cope in high school and beyond.
He’s currently in junior school and the gap between him and peers are widening rapidly.
He’s 7 years old and can’t be trusted in the same room as my 1 year old for more than 10 seconds on his own, he does stupid things that can harm him (things he knows he shouldn’t do)

Don’t feel bad for feeling this way, if I had a magic wand I would take it all from him so he can lead a normal life

R3b3kah my ds 6 has developmental delay, speech delay and learning difficulties, this mostly affects his academic skills, he is 2 years behind academically at school. He has now an EHCP and will go to an excellent SS in September, when his mainstream infant school ends. Does your ds have an EHCP, if he is so behind, he should have. If he has, have you considered a special school or SS.

Yes he’s just been accepted for one
We need to start looking into specialist schools, it’s so hard because he loves his junior school but he’s so far behind he struggles and they don’t have the 1-1 for him that he needs

Ahh R3b3kah good luck with the search. I think it will be great in the long run, we looked around mainstream middle schools, and weren't really impressed, until we saw this SS with an excellent Ofstead. We can see why it has, it is a beacon school in terms of SS, inspiring, happy, and wonderful school, which I think will nurture and challenge ds. They go up to 19 and offer GCSEs they, try to cater for every child's needs. I think the way funding for SEN is going in Mainstream schools, special school is the way I feel.

Autism is such a wise spectrum. I wonder if those 'positive spinners' have milder traits which can be in some ways endearing? As opposed to many who have posted here who have loved ones more with more complex needs on the spectrum? I don't have much experience in autism but have such massive respect for those who parents who deal with it on a daily basis.

How you feel is completely normal. Some people feel they wouldn’t change a thing, some people feel the need to say they wouldn’t but only say it as they feel they should and some wish they could magic autism away. It’s such a spectrum and there’s no right or wrong way to feel about your child having autism, whether youbwoukd change it or not doesn’t mean you love him any less and that’s all that matters

I personally think that moderate-severe autism should be called something different (no idea what though) as it causes so much confusion.

I hear you. I generally describe DS as "autistic with severe learning disabilities and also deaf", as if I simply say 'autistic' then people expect him to function to some extent. He doesn't. He's an over-grown toddler.

However, I sometimes wonder whether he has a better life than children who are more high-functioning. At least he doesn't know that he is disabled, he doesn't know what is expected of him, he doesn't know that his behaviour is different to other children, and he doesn't know that people could make fun of him (not yet, anyway). He's living in ignorant bliss

@Saffkey1 - you've brought out my people! DD1 is HF ASD but just because she has words doesn't mean is fecking hell somedays, some point of most days actually. I'd love her not to have to face what she does everyday. The older DD2 gets the more we realise just how much ASD affects DD1.

The older she get the less 'cute' her 'quirks' become, the flapping, squeaking, ear defenders, etc. were accepted at 5 but are now not so 'cute' at 12!

I send my life in school sorting support (or lack of it), arguing about why plans are not being followed, discussing 'quirks' with teachers, collecting a girl who has fallen apart - all whilst trying to portray the 'with it, calm, collected SEN mother who never tires, falls apart or complains.

Eggysmom I feel the same about my ds. He doesn’t have a clue he’s different, and having always been to complex needs school where all his 6 other classmates are exactly the same he has no experience of being the odd one out or of being bullied for being different.

I had a 2 year battle with the local authority to get him into special school - from the minute he was 2 and started nursery I applied for an ehcp for him with the intention of getting a special school place and I was utterly relentless in doing so. I am sure the ehcp department used to see my number flash up on their telephone system and just groan.

I am so pleased we did though. It’s definitely the best and right place for him.

I was thinking that GherkinOnToast, dd is 11 nearly 12, and is almost as tall as me, what was cute 5 years ago, like the flapping, stimming, jumping up and down, is not cute now and less understandable.

I think we shouldn't judge others , as pp,a have said autism is such a huge spectrum a d now it affects someone is very individual my son has severe autism and learning he has very different needs to say Anne Hegarty I would take his disabilities away in a heartbeat but that's me talking about my child

I mostly agree..

My sons 3 and has classic autism although as he’s non verbal we don’t know how “severe” he is or the range of his difficulties yet.

If there wasn’t a cure for his sake yes id give it to him because I want his life to be as easy as possible. BUT he does have many many quirks I would miss. He’s so so funny and very affectionate. I have wondered if he were neurotypical what he wouldn’t do anymore and was mannerisms/habits he would lose. He’s not generally hard work though yet as he doesn’t have many meltdowns and we stick to places he can cope.

If there was a cure *

That's true to Thankfuck ,ds is very loving and cuddley and he makes me smile every day (and cry and scream)I wouldn't be without him though .

Can anyone tell me how they knew their 4 year old had severe autism? It isn’t a word my son’s Paediatrician has ever used, or mild for that matter.
My just turned 4 year old has ‘classic autism’ apparently, diagnosed at 2. He is non verbal, but does babble like a baby. He sleeps all night, but has done from around 6 weeks old. He doesn’t injure himself or others, but would bolt into the road given the chance, although he will hold hands if you tell him, walks really well (walking at 12 months), and does understand some ‘commands’. He is still in nappies, but will get a fresh one out of the packet if he hasn’t got one on and knows he will wee (or 5 times out of 20 he will go and get one when you tell him).
He doesn’t have tantrums or meltdowns (if his tablet runs out he will pass it to you and sometimes cries for 30 seconds if you say “all gone” and put it away).
He is affectionate and seems to like being around people (not really children his own age it appears).

I was just wondering what are the chances of him having it severe as he gets older?
I really don’t want to offend anyone and I hope I haven’t, his Paediatrician just says “it’s hard to tell how it will develop”, which I understand.
Just wondering if anyone else’s child had been similar at that age? Non verbal but developed speech after 4?

DS (4) is disgnosed autism, severe speech & language delay & epilepsy. Already in special nursery, I imagine 2019 we will have his learning difficulty range put on paper & sensory processing disorder disgnosed.

The more I read about autism the more I see it in myself. However I never had any developmental delays.

My son is so vulnerable. And it’s a tough tough world. The worries take over my life. He was bite so hard through a vest t shirt & hoodie that his skin was broken & he was bleeding. He didn’t even cry, no reaction at all. Was almost a year ago & it still upsets me.

I would 100% do / give him anything that will make his life easier for him.

The thing is you can't really Boswell my son is 8 and still non verbal he's using some PECS many four year olds will develop speech ,many won't or maybe much later it's very complex as I'm sure your aware my son is still behind some kids in some areas at his special school but ahead in some areas I have learned to embrace any progress no matter how small it seems!

Ihateboswell-
Someone I know has autism and is now married to an autisic women living a fairly normal life was was nonverbal until 9 and in nappies until nearly 11!

Exactly Thankfuck it's so complex! I refuse to believe my child won't ever talk because who knows there is no physical reason why he can't be May never develop speech but maybe he will!