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.

Just throwing this out there, in case it's not been thought of - those of you with children who have trouble sleeping or staying asleep, do they have weighted blankets? A friend of mine whose 12yo autistic child was waking several times a night has just got one and it's made the world of difference to the sleeping.

I'm a bit of a cuckoo on the thread as I only work with people with autism (both of whom have Downs too, so I only know about that very specific combination). None of my kids have any kind of diagnosis although dc3 doesn't sleep much, can't sleep through and has sensory issues with food (which are very slowly improving - he has eaten eggand pasta for the first time this month). I used to worry about dc2 as well, he used to be very shy and anxious and struggle with noise and routine change but he seems to have largely "grown out of" it, although he's still a worrier, so it can't have been anything in his case.

I'd feel a bit of a fraud getting a weighted blanket - but actually if it might help I may try it. My non sleeper is very, very tactile so it might help.

Evelyn - this might help you feel less of a "fraud" (although I don't think you have any need to anyway) www.mosaicweightedblankets.com/insomnia/

Thanks Thumbwitches that does help. Might help me explain to DH when he raises his eyebrows too! Think I might order one after payday...

I'd love a weighted blanket but they're so very expensive

Bloody hell, you're not wrong. 100-300? Has anyone got one and was it worth the money and washable

I made one. You buy the pellets from eBay and I got a cheap duvet cover from ASDA. As long as you double stitch the pockets it's fine. I'd offer to make them but the postage would be awful.

@HangingRoundInABofAlorsStance Put Gewichtsdecke STARS Minky Decke into eBay.de - there's a buy it now for 50€ with 100% positive 165 rating

Just found www.vest-pol.pl - polish but with German and English language website. That's the company selling the blankets on eBay. 58€ for a 120 X 150cm quilt with a 3kg regulated load (glass granules). Plain colours for that price and €19.70 courier fee to Germany. Not cheap but cheaper than Amazon...

I used the poly pellets. Glass makes me wary.

Thanks for those links eve
So my question for the day:

How many of you have NT children copying autistic siblings' behaviour, how old were they, how did you react and when did it stop? or did it turn out they had similar but had not been diagnosed?

I have spoken before of fear of DD 'masking': This morning she screamed non stop and started banging her head. 7 yo.
trigger - me wanting to give her a non-matching pencil case (in Germany they have two - and you get them as a set usually but one of hers was smelly so I wanted to swap it just for today)
No idea I would get that reaction although I have experienced similar wrt how she perceives homework should be or when she thinks something should be done a certain way. Usually screaming but not headbanging.
Despite me spraying said pencil case with deo and repacking it was by then too late and this morning escalated to her not wanting her hair brushed and then refusing to go to school. Her father has taken her in. She knows her brother is at home with me atm having been permanently excluded from his kindergarten. So is also .

Any experience, views or advice appreciated. please not about the pencil case, it had ended up in ketchup, don't ask and wetwiping wasn't cutting it, i am the opposite of a clean freak trust me!

Second hand experience here, but still possibly valid (although maybe not, given the ages) - my husband's cousin has 3 DC, 1 older and twins. The older one and one of the twins have both been diagnosed with autism - but they weren't sure about the other twin because he copied a lot of their behaviours and had some of his own interesting issues. That was until they got to school (aged 5 here) and the differences became much more apparent, that they were able to work out that the second twin is not on the spectrum.

I hate autism today. We’ve had a long wet journey from the north to London for an early morning specialist appointment tomorrow at The Maudsley Hospital. Kind of a last resort. Not feeling hopeful.

Good luck x

wishing you all the best Suki. I didn't realise the Maudsley specialise in autism?

Hope you both got there in one piece Suki

I've never been officially diagnosed, but I suspect I have high functioning autism. There are certainly some things I hate about it:
I have a good job (in IT), but I will probably never get a promotion to managing people (and I'd probably turn one down if offered), because my social skills are not so good.
My house is a mess- my executive function isn't so good, I'm overwhelmed by tidying. It's probably always going to be this way.
I don't have many friends. I do most of my socializing online (on forums and social media).
I can't read nonverbal cues. I can fake it enough to seem to show the right body language in, say, interviews (well, at least for IT, it's kind of a haven for high-functioning autistics), but I don't speak body language.
I have anxiety. Anxiety can fuck off and die, as soon as possible.
When you can't read body language or nonverbal cues, lots of things can blindside you in relationships. You don't see that people are mad at you until they blow up. This of course contributes to anxiety.

Home now.....thanks for all the good thoughts. It took us 6 hours to drive home. They’ve given an opinion on his medication as his psychiatrist here had tried everything. He has asd but a co-morbid of ocd. Crippling.

Geekymommy, I too wish my son’s anxiety would fuck right off. And as a newly diagnosed Aspergers person myself, I’m very much like you.

Is he high-functioning? If he is, you might want to encourage him toward a career in the hard sciences, engineering, or IT. Some autistic quirks seem to be better tolerated in those fields than they are in others, and it's a decent way to make a living. Nonstandard dress and grooming (some autistic people can't or won't conform to the usual standards in these areas) are often tolerated. Most days, I get to sit in my cube and do actual work and not have to say much more than "hello" to anyone else!

Thoughts to everyone struggling

Genetics can play a huge part I think. DD1 has a DX of classic autism, her younger sibling is NT but was born with craniosynostosis, a neurological physical condition.

Can I ask people opinions on whether it's best to keep a moderately autistic child in mains where they are struggling to meet her needs or to try and get her into a local special school where it is known for embracing the child's individual autism but doesn't really help when out of the school as the students have their every whim addressed and their learning is facilated, for example, if they don't want to do any work that is allowed ...they can choose to help in the kitchen or just stay outside on the swing or on their laptop.

The students are very happy there. ..but not much difference or development in their behaviour which impacts on life outside of the special school.

Ophelia is she unhappy in mainstream, or is it just the school who are struggling.

If she's very unhappy and that would almost certainly change at the special school that would be key, for me.

She seems happy but I don't think they are happy to be putting in strategies for her. ..nothing is said as such but I have noticed in Review meetings thar I am being increasingly reminded of the effect her behaviour is having on the other children and how we have to work harder at getting her to conform to the norm, iyswim.
My friend has her son at the aforementioned special school and said that while he is happy and the strategies in place for him are excellent, his behaviour outside school is getting more and more difficult to manage. She sees no improvement in him at all if anything he is more and more behaviourally channeling.