ASD and mental health

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Forgive me if I ramble here, I have a lot of thoughts I want to try to get down!

Ds is 9 and is on the assessment waiting list. His paediatrician says he is highly likely to get a diagnosis of autism.
We are going through a really tough time with him, he is deeply unhappy, hates his life, hates school, comes home and is angry, constantly agitated, asks for us to kill him as he doesn't want to be alive.
On top of the ASD, he seems to us to be quite depressed.

Our GP made an urgent referral to CAMHS, as ds was saying some very worrying things in his lucid moments (which are few and far between).

The GP won't see him about this, as he explained it is CAMHS territory, hence the referral.
I saw someone at CAMHS yesterday, they were very nice, took details, then explained that because he was (likely to be) autistic, and on the pathway for assessment and hopefully diagnosis, they can't actually do anything until either a) diagnosis or b) he starts self harming or trying to kill himself.
If ASD didn't come into this, we feel that his mental health would be taken much more seriously.

I was lucky enough to be invited onto a cygnet course, which has been amazing. The lady taking this course was explaining about the scarily high levels of mental health problems.

Now, I may be being completely dense, but it feels like I am trying my best to highlight how miserable my little boy is, and how worried we are about him, and no-one is listening because it's not their field, or he's already on the pathway so there's nothing can be done.

In the meantime, ds has nearly two years to get through before possible diagnosis.

I feel that this gap must be contributing to the high levels of MH problems in people with ASDs.

Have I got the wrong end of the stick? If so, why?
If not, what do I do? I know a couple of children similar age to ds that have been put on antidepressants to help them, could something like this be appropriate or helpful for ds?

At the moment we are struggling to get him to bed before 10-11 pm, as he gets very upset, wants us near (but not talking or touching), and is generally very distressed about stuff - mostly his teacher. Once asleep, he generally sleeps OKish, often has nightmares, often wakes up, but is quite easy to settle.
He eats like a horse.
I see what you're getting at here, depression would affect appetite and sleep wouldn't it?

Most of the time, we can't actually get through to him enough to work on any skills, but our firefighting skills are definitely getting better!
The lady running the cygnet course feels that if things are this bad for him, and school causes this many meltdowns, school is not meeting his needs, but without him telling us what's stressing him, we don't know how to help.
It's a small school, so he can't change teacher until September (I hope). He is fixated on this teacher being the cause of all his problems.

I hate to see him so miserable, when of all of my dc, he was so happy and sparky. He's completely lost this. It's crap that there doesn't seem to be anything I can do to make him happy again. (Sorry, feeling quite upset about this at the moment)

I'll try young minds. The nas helpline for my area is a mobile that doesn't seem to be manned. I'll look again and find a main number.

Thankyou for replying again :)

School has made Dd3 very low in the past and this year has been awful. She was moved into another class but not totally away from the teacher who has caused her so much trouble.

I keep saying to various so called Proffs why do school keep putting all different strategies in place to "support" Dd3 when actually all they need to do is tell this one teacher to put her brain in gear before she opens her gob!!

I really feel for you and your Ds fav I have no answers except maybe a different school. It is awful to think of children being medicated because some teachers in schools are incapable of understanding how hard our kids a working and paddling frantically to keep up.

See what you mean about sleep. I think it's become a vicious circle - he's pissed off so he doesn't sleep, so he's pissed off and doesn't sleep.

I'll try to tire him out over the weekend and see if we can get back to earlier bedtimes.

We've had a chat about stuff. He hates his teacher, but I'm trying to get him to see that it's only for a few short weeks.
He doesn't like rough play, but goes along with it because that's what people do, but it leaves him feeling frustrated and confused, which adds to the stress. There were some things in place in school which have fizzled out, extra breaks, things like that, but he doesn't like being marked out as different, so doesn't want me to ask for them to be reinstated.

He sounds like your ds when it comes to playing with friends. He has one friend who doesn't react like this with, he is much younger and happy to do exactly what ds wants, so there's no need to compromise or think about anyone else, I think this'll change as the friend gets older though.

He finds it very difficult to sit still. Enforced rest makes him angry (along with a million other things :o)

He seems to only switch off if he's looking for creepy crawlies somewhere, so we'll have a bug hunting day I think.

He hates being different. Dress up days at school are a nightmare, because he doesn't want to dress up, but he doesn't want to be the only one in uniform.

You know (excuse the language) but this is ridiculous fucking stupid funding politics. It's not just mental health, but so many services are so keen to wash their hands of a prospective patient if they can suggest that another condition puts the responsibility - and financial imperative - on a different service.

It's sickening that you're having to deal with this. You probably need to involve PALS - even if you have no success in getting any further with their help, your frustration will be on record.

Thanks ouryve, never thought of PALS.

I'll be back to CAMHS within three weeks to discuss future involvement for ds. I need to write a list of things to cover, or I'll forget.
I do feel that there's a gap that should be filled which could potentially improve the mental health problem.
Then again, I don't really know enough about ASD etc to know that for sure.

Just feel at the moment that ds is struggling, and although dh and I are learning quickly, we're managing the situation rather than making things. Enter for him.

Making things better that should have been.

It should be prevention rather than cure IMO.

mental health services get worse as they get older....my dd is 20, was under camhs since she was 9, as soon as she was 17 they refered her to adult mental health, they can't treat her because she has asd, we got private assessment done and it says dd needs a lot of different treatments, one being for ptsd, she is classed high risk suicide, needs to be watched over 24/7, we are still being refused treatment as dd has a dx of asd been told if we wait another 2yrs then they might consider treatment.

Davids, that's shit. I'm so sorry.

complained to pals, was them who investigated and said 2yrs, been to the ombudsman and they can only get us an apology, tried legal and they can't help.
was just told by amhs don't leave dd on her own and i got a pat on the back saying carry on your doing everything right as dd is still alive.

Zzzzz, that's what we're trying to do, lots of bug hunting, trying to make some arrangements with a local falconry centre, lots of animal based things.

My main job next week is making a holiday timetable, so it's pretty much mapped out with things he will enjoy. I will even get over my fear of butterflies to take him to a tropical butterfly world (and hope I don't freak out and kill any rare specimens)

I really find it depressing though that it's almost inevitable that people with ASD will end up with MH issues, which proves to me that something is drastically wrong somewhere in the system. I might try to compose a letter to our local mp, not sure if it would do anything, but might be worth a try!

Would it be daft to suggest to MNHQ that they add MH services for people with ASD to their list of campaigns?

Early last year, ds1 was referred to CAMHS, he'd gone through a tough time at school and was depressed. They couldn't do enough for us (he was unimpressed by any intervention, but they were a tremendous support to dh and I which allowed us to help him)

Ds2 is, in our opinion, in worse shape mentally than ds1 was, yet there's nothing they can do.

hi~ im an adult with aspergers, though no children, but i bought id chip in with a bit of advice, and hope it'll be useful?

yes- autism services are crap and underfunded. find a local support group and ask for help there~ other people have been through it before you and will help & guide you. if you've got the energy, complain to your MP. sometimes it does make a difference, in speeding things up, though of course they can't magic services into existence.

also try the parents board on wrong planet.net~ its international, but has a high volume of traffic, as well as being a really established site if you want to find a ton of old threads to read through; always helpful.

change Gps if you need to, to get extra help.

ANYWAY~ regardless of when your son is diagnosed, addressing some of his stress triggers will help; advice to look into diet is excellent.

there is a known link between autism & poor digestion (as well as food sensitivity & lowered immunity, including allergies). diet changes have been found to improve behaviour- most commonly cutting out casein (in dairy) and wheat. adding high volumes of EFAs (so blend up some duo's oil or similar in a smoothie) also helps, as do different vitamins and supplements. i can't eat nightshade veg, beans, grains (though dry toast or biscuits are less bad), and some fruit. cutting them out my diet helps not ono my behaviour, but mental clarity & behaviour.

since your son has trouble sleeping, & sensory issues- have you heard of/got a weighted blanket?? we often hate light touch, but really heavy pressure is off the scale relaxing. weighted blankets & swing chairs can be amazing for kids & adults. Autisic people often find swinging, or rocking relaxing so a hammock chair or normal hammock might help.

with autism there is no single, magic spell, but though my AS is still really crap, I've managed to lower my stress levels by up to 40% by changing stuff. i wear ear plugs or headphones w music when I'm out (hyperacuity- sensitive to high pitched sounds), have blackout curtains in my room (slightly sensitive to sunlight, but very sensitive to the different atmospheric pressure of daytime- yes, this really is a thing!!).

understanding & dealing with as many of your son's triggers will make a huge difference- tho my parents were very patient i was often thrown half dressed into the bath, then scolded for not coming out. air is ok, water is ok, but getting in or out of baths/ showers is HORRIBLE, EVIL, AND INTENSE. stuff like that you're not going to understand unless he can explain it to you (it took me tip my 30s to work that one out), or have other adults or parents suggest stuff.

diet is easy to change, and you can pack a ton of fruit, some greens 7 supplements into a smoothie- just make sure the texture and consistency is ok :P

do take a look on some autism sites to see things our son may struggle with; much of it will be things you won't guess til someone explains it for you. i never got the light touch bad, heavy touch good thing til someone spoke of their own experiences.

sorry for the long ramble (my AS makes me verbose!); hope you get help soon.

Thankyou turquoise :)

Diet is one thing we keep looking at, but there seems to be so many mixed messages about what to cut out and which supplements to add. I guess we're just going to have to try different things and see how it goes.

Weighted blankets sound good. I've read about them, but never thought about getting one, as he doesn't like to be touched.