To hate Autism

[EnglishRose1320]

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.

Frustrating, Sirzy 😩

Thanks Bish I do appreciate you always replying lovely x
I asked for a table and could he do a puzzle but they refused, he was expected to just sit there. I do wonder if he was being set up to fail but their attitude tended to be concern that other children would say He is doing that/getting that/doesnt have to do that etc so why cant I? and that in primary he will have to do what the others do.

@ChickenPaws

Check your neurotypical privilege - I love this! I might use this against our bastard mainstream.

I’ve found I now have low expectations on most things. If we eat toast for dinner I don’t care. If one kid spends two hours playing minecraft I’m not fussed. I spend so much of my time beating myself up it’s painful. I have to be strong for my kids and at times it’s hard as the mainstream system is against us.

Hugs to all!

I think the biggest problem for me is that I don't fit in anywhere, I don't have any friends at all even though I try, and sadly my dd seems to have similar issues. We've already changed schools and moved once due to bullying, but it still goes on. She'll soon be at an age where she goes away to college, and I'm scared for her.

I often feel ignored, and in some ways us both having aspergers makes it even more difficult as a lot of the things she does are triggers for me. We are too similar in a lot of ways. I feel I've let her down as she doesn't see me socialising, etc, so she's never had the opportunity to learn from me how to make friends/behave, etc.

I often want to just get in a car and drive away and not go back because I really struggle to cope.

Kate, your earlier post really resonated with me and made me tearful (just sad).

Thank you for having the courage to say it and you express it so well.

FeralBeryl Thank you for thinking of us, unfortunately we are in Oz. And I am just not able to purchase clothes without looking at them/dd trying them on.

Hanging maybe contact the mother who writes that blog - her English is fluent and she managed to keep her autistic sons in mainstream kindergarten. I think one is at mainstream school and one a special school now. I have her on FB but don't look at FB much any more. She was always fighting the system and might have tips.

An inklusions kindergarten might be the answer for you - children with special needs get priority and the rest of the places are open to other children. They're usually over subscribed for children without special needs due to better qualified staff and higher adult: child ratios.

My DD goes to Realschule - she's a worrier and a stress head and we knew Gymnasium would be stressful so although she had the grades for gymnasium we encouraged her to choose Realschule. She's been very happy there, not stressed but sufficiently challenged as she's never been a natural at maths so will always have to work at that! Shes in the language stream so does French - only benefit of gymnasium would have been the chance to do a third foreign language. She's planning to go to her Allgemeine Abi after Realschule - she'd be able to do that at the next door gymnasium given she's a native English speaker and has never had anything but a 1 in English, or there are are several other options. My ds1 will go to Realschule too - I see it as the closest thing to a UK 11-16 school, not as "moving down" and gymnasium would probably send us all over the edge!

I hate my autism i wish i didnt have it but i dont hate autistic people.

Hello eve I might contact her yes, as I only know one mum where I am who got an Aspergers diagnosis. I read her blog though and she has ended up taking all of her kids out of the kita? the management appeared to think that if she was unhappy with how they did things then it was not suitable for her youngest either. Charming.
In hindsight my eldest would have fared better in Realschule and that is still a possibility, we shall see if she passes year 9 - it was just a shame to see her friend with ADHD not provided for. A move now might not help as she is doing Wirtschaft pathway and failing French brilliantly
I appreciate your insights though, makes me feel better about it all thank you x
2cold thinking of you this morning (was reading a guardian article about loneliness - I get lonely often which is why I come on here too much) It is shit about your DD being bullied, I despair sometimes, I really do. and a hug xx

Ah has she! I must admit I haven't looked at her blog in a year or so. Last time I looked she was fighting the homework club at her second son's primary school, and her 3rd son was at kindergarten and the youngest girl not kindergarten age yet. Time flies. I must look again.

A family up the road from us refused to send any of their children to kindergarten after the kindergarten suggested their eldest might have special needs and wanted them to see their Kinderarzt and let them bring in someone to observe her at kindergarten. They just took her out and wouldn't send the younger two at all. They all then went to a Montisorri Grundschule and ours to the local school I don't know what happened in the end. There are usually other options though...

Do you have a Waldkindergarten? There are usually a few kindergarten options so there may be a better fit if you can start on the same page.

Mind you as I recall her kindergarten also objected to her speaking English to the kids where ours has never been anything but positive about that. Kindergartens vary massively!

I supported the kita when they had concerns - signed for the observations for both DD and DS - despite some misgivings as they were referring quite a few children at the time (dd1 referred for loud voice, clumsiness, concentration) (ds referred the 1st time for slow German language development, extended tantrums phase and not taking part) dd was deemed in need of Turnen, ds was intially deemed nt then referred a second time for slow German language development, reacting badly when something didn't meet what he had envisioned and not taking part.
The woman who observed him concluded he was gifted with sensory issues/sensitivity and also recommended ergotherapy as she could not tell if he was ambidextrous or not. Paediatrican refused to give a referral for ergotherapy as she said his fine motor skills were okay. She said she could only refer for social competence groups or Integrationshilfe with a firm diagnosis. He sees another doctor/psych in March. Both doctors dismissing him having Aspergers because he can make eye contact and is verbal. His sensitivity to noise, clothing, food and refusals/meltdowns when things are not right, perfectionism with building blocks etc I do not now what they are putting down to.
I was told to believe him when he said he was bored and that he was frustrated.
Thing is, I have taught gifted and I have taught children with ASD as well as children with SPLD ADHD and EBD and if you asked me, I would have said my son was an Aspie. He also did not form strong relationships in Kita, he liked one worker who did crafts with him but he tended to get on children's nerves.
I just do not know. I hate the feeling that my parenting has messed him up. He meets the PDA criteria wrt need to control everything always but attachment disorder has same criteria: that breaks me as I had PND but breastfed all three until they were 3 and coslept with them. But screentime is an issue and I do not know if virtual autism is bullshit or a thing. As you can tell, I am a complete mess right now.
Sorry for venting.

Sorry Hanging the comment about the family up the road was a tangent triggered by youbsaying the other lady took all her kids out, not a comment on your situation!

You can't cause autism. Is virtual autism the same as situational autism? Situational autism as I understand it isn't actually autism but symptoms similar to profound autism caused by extreme neglect (the horror cases you occasionally hear of where a child has been kept locked in a room in their own faeces without human contact all their life) and is really rare, not caused by too much screen time. We have an older lady at my work (not someone I work with directly) who was kept in a cage as a child and is unsurprisingly massively damaged... You breastfed, coslept, sent your son to kindergarten, let him watch TV it seems highly unlikely you've caused harm!

@HangingRoundInABofAlorsStance heh. I can make eye contact. I hate it but I can. I ca also speak unless in shut down. So those are ridiculous reasons not to diagnose.

I must say Hanging my youngest has a friend diagnosed with what they call early childhood autism here who can and does make eye contact. In fact we know him from the playground where he plays with dc3 and plays just like dc3 (which is a bit quirky but NT...). His social skills aren't out of the normal range either - he is a bit pushy and demanding, but some NT kids are, in fact I must be getting old because I feel as though most of ds3's friends are, children seem to have changed since dc1 was 6...

It wasn't til his mum dropped him at the end of the road to play with dc3 and went off somewhere, and I had sole charge of him that I saw the extent of his difficulties. His mum had decided not to tell me he was autistic, which meant that I wasn't remotely prepared, still can't get my head around why she did that to him... She told me a week or so later that he'd been diagnosed at 3 and was waiting for a place in a special school specifically for "hoch intelligente Kinder mit Autismus Spektrum Störung"... At least that's what she said. We see him less now as he has his place but is picked up in a mini bus at 7am and delivered back at 5:30pm.

He holds intense eye contact while asking for things from adults (he rang the bell and asked for the sledge on the drive the other day despite the fact I always say no ) so eye contact can't be the defining criteria even here.

I didn't think you meant me eve sorry if I sounded defensive, you're just a good listener with experience of how things work here so I thought I'd give you the full picture. I am keeping DS at home until at least Easter and until he has had the psych evaluation. I am aware that he does not have to attend kindy at all but the test next January (shapes, drawing, German etc) will be harder for him if he hasn't and I will have to disclose it all on the form anyway. He could go to the once a week German course from September if I contact the school directly...they would tell me straight away if he cannot cope. He could do school just til 11.15 no Hort and I could get him straight away (his sister is ganztags) but all this is damaging if it's not the right route for him. I am going to research a couple of places that take EBD so have more staff but it needs to go through the Gesundheitsamt in any case. What I want to avoid is total school refusal because, as you know, even with my PGCE I cannot home school him here. He was refusing kindy and they could not/would not allow him in on a part-time basis (even with me offering full fees) because it was outside the box/not routine/would not help him long term. In the UK he could have done afternoons only or been allowed in when he was ready to cope for a couple of hours but here, it was He must attend 8-3 every day irrespective of your shifts (I had offered to pick him up early when work allowed or only take him in when I actually had shifts but fair enough, they wanted consistency. Flexibility just wasn't there)
The eye contact criteria is as annoying for me as when the Erzieherin claimed he couldn't have an SEN because he was intelligent
The virtual autism thing was based on these articles that I really should not have read
www.psychologytoday.com/blog/the-fallible-mind/201706/there-is-new-link-between-screen-time-and-autism
www.madinamerica.com/2017/08/virtual-autism-explain-rising-asd-diagnoses/
but i have always chatted to my kids and took them out and done running monologues of what we were doing before they could talk.
I cannot imagine us all becoming a screen-free household though and that's a red flag right there.

Hanging I don't know how reputable Psychology Today is - it sounds as though it should be reputable but it talks about 90% of children recovering from that "type" of autism just by removing screens, which suggests that they never were autistic in the first place! It sounds a bit odd, and actually reading between the lines is the children discussed in the article sound more like institutionalised and neglected children, not autistic.

I call the articule bollocks. I know plenty of children who do not have access to screen until a lot older and they are still autistic. As a previous poster said, if they were ‘cured’ then they weren’t autistic.

article

I’ve spent my life pretending to appear NT and the stress is killing. It is absolutely exhausting.

We've spent a lot of time teaching DS how to appear NT and yes, it is very tiring for him. BUT we have made it very clear that it is completely up to him if he wants to do it. That there may be situations where he wants to (e.g. job interview) but that he should not feel obliged to do so.

Autism is a developmental disorder. You come out cooked at 9 months and the autism is present.

Thankyou Eve infinito +suki I do know that deep down, I really do, I guess I am tired of my parenting being called into question, subtle innuendo follows must be something I did...
--and no I don't want to do another parenting course before you take me seriously-

The "Mad in America Article" I call bs. There is no consideration for the real rise in autism dx, and that being that we now know what we are actually dealing with, and how it presents.

Also, more girls are being dx with it now too.

I believe, as Tony Attwood presented, that it was misdiagnosed years ago. Mainly as childhood psychosis and childhood schizophrenia.

In 1975, 1 in 5000 children were diagnosed with autism. I can tell you of three adults I know, all children in 1975, who would have been dx with autism using today's criteria.

The article also doesn't consider that just because only 1 in 5000 were diagnosed, it doesn't mean that many many more didn't go undiagnosed. A diagnosis rate of 1 in 5000 doesn't mean that the occurrence rate at the time was only 1 in 5000

Yep different I think most people who have contact with people with an autism diagnosis these days have a few older people in the back of their minds who they are 99% sure would also get a diagnosis. Aspergers/ high functioning was often not diagnosed as anything, and more profound autism misdiagnosed as psychosis. Not to mention all the people with multiple conditions where the more obvious one was diagnosed and assumed to account for the autistic traits too (like the people with both Downs and autism, which is quite common).

Asperger's wasn't even recognised in the UK until 1981 and it was only added to the ICD-10 in 1992 and the DSM-4 in 1994, I know of a number of older adults who have had their dx re-classified as Autism within the last 20 years. There are several members of our family who would undoubtedly get a dx of AS now who wouldn't have been dxd with anything in the 70's and 80's, when I raised concerns about Dd in the late 90's my concerns were swept aside because dd was "obviously intelligent" I didn't even know of AS until 2004 when it was first mentioned to me in relation to DS and there are a growing number of adults who are seeking a dx, dd is on the waiting list for adult assessment and the current waiting time is 1 year (been on the list for 5 months)