We are increasingly aware that Pagboys anxiety is HUGE. School have gently suggested medication

[Pagwatch]

Does anyone have experience?

He is 15 now and is constantly displaying anxiety based behaviours recently adding verbal tics to his repertoire.
He has never used any medication and frankly I have no idea where to start including who I should consult.

Any info, link or experience would be welcome

Oh I hear you - definitely understand what you mean. FWIW I think if I felt that every other method of controlling anxiety had been explored then it would be time to consider medication. I'm not sure professionals always look at other methods (although it entirely depends on the circumstances - and of course sometimes they have - I just think sometimes they jump). It's hard though isn't it as it's so hard for us to understand where the anxiety is being generated if that makes sense.

DS1 went surfing last weekend. He was screaming the place down and pretty anxious (I think in part because his previous session had been cancelled due to the storm), he yelled at me all morning, was a bloody nightmare on the way to the beach - very controlling about routes etc (which tends to be anxiety related). Very wound up getting changed - just stood SCREAMING in the car park, hitting himself very hard, biting his hand etc etc - all the usual. As soon as he hit the water he calmed right down. Didn't want to get out when his hour was up, but was totally relaxed. I just need to work out a way to get him surfing every day

Hi Pag ds is 16 and really suffers from anxiety, he always has it has to be said but has steadily increased since puberty. Last year ds started taking prozac at a quarter of the recommended dose as the psych considered his strange reactions to medication previously (a mild sedative had him climbing walls for three days) The plan was to steadily increase the dose and then start CBT, ds scuppered the plan (as he frequently does) by refusing to increase and then refusing to take it at all and being unable to engage with CBT.
His entry into independent specialist school has cut the anxiety considerably and I'd say it's manageable for now.

Pag I came on to add myself it may be a hormone thing. Purely because a boy in my class (same age, Autistic dx) has began displaying much higher levels of anxiety and not distracted as he was previously. We have thought it may be puberty related - especially as his appitite has trebled.

He saw CAMHS and pychiatrist gave him some medication, he also has an emergency protocol for when his anxiety escalates ending in some valium type medication that can be given. He has a senesory intergration programme to be completed twice daily (is working and is also based on deep pressure). We also do lot's of circuits! (walks round the playground to allow him to run off the sudden bursts of energy he gets).

I am not sure where on the ASD spectrum your DS is (verbal?, mainstream school?) but just wanted to add the experience for your information.

(I work in special ed school)

Thanks all.
He is actually getting worse, almost by the day.

I have kept him at home today.

I spoke to his GP and he will support and action a referral to the unit at the maudsley (so particular thanks for that bochead) so I have given him the papers and spoken to the autism team. Hopefully that will help a bit.

Conversely he has been doing brilliantly at some of the other stuff we have been trying. He went for a trial session at the local wall climbing centre and was really good at it. They are happy for him to join the youth climbing group if one of us attends with him which dh is keen to do. His swimming lessons have also been a success.

It's just so hard to see him so very upset [sigh]

But I will continue to update - sharing the journey and all that.

sorry to hear pagboy is still unsettled.

do you think it could be associated with the leaps forward he is taking in other areas? d1 periodically descends into phases of extreme anxiety, constant pushing and persistent behaviour (her usual outlet of frustration - take it out on me! ), language skills go out of the window so she can't tell us how she is feeling etc.

and then, when we are all at the end of our tether, and the house is a hive of screams and angst (mostly from me - when will I ever learn ), she exhibits a new, unexpected skill or moves forward massively (like ebing able to take part in a class/group, for eg) and it all makes sense.

sorry waffling. kind of like infants/toddlers - you know when they are learning something new, and eg potty training goes by the wayside for a while, or whatever their last learnt skill is? dd1 still has that pattern - massive regression and loss of recently acquired skills and language, while whatever new is forming takes shape. then it all pulls together (slowly), and we have calm for a little whle before the next new skill causes massive frustration and anxiety, and so on.

could that sort of thing be happening?

after all, you say he is doing brilliantly at swimming, and new climbing club, and he had a great run of independence to get his strawberry smelling bear, didn't he?

I hope the referral comes through soon, and that it all settles down a bit.

oh yes indeed, he did brilliantly to get his strawberry bear.

I took him out this morning and got him a therapeutic massage which de-stressed him massively. He is much calmer now, at least for a bit. I am going to keep massaging him when I can but the professional deep pressure stress buster massage was a joy to watch. He kind of fought it for 10 mins then just melted into the bed. I have booked another for next week.

That sounds so familiar Silver, the grim periods before a surge. I don't know if I am just feeling glum but this just feels like a slide. But I will certainly keep my fingers crossed.

Anyway I know I keep saying it but thanks. Just having people nod along on here makes me less likely to weep in the supermarket iykwim.

We've had mixed experiences with medication for anxiety (risperidone) for ds but one thing that really helped him was cognitive behavioural therapy. It's not a cure-all, he still gets very anxious but cbt gave him some techniques that help him some of the time.

How effective would cbt be with a young man who functions at pre school level for communication?

I wouldn't think CBT would be much help in those circumstances Pag. It relies on the patient having some previous knowledge of 'normality' and getting them to recognise what is currently wrong and start to develop strategies to get back to 'normality'.

We were told that a constantly high level of anxiety is a features of Aspergers. Because they are constantly struggling to understand the world around them, understnad people actions etc and having to try to actively act 'normally' it results in constant anxiety.

When, on top of that, they are placed under further stress, that already hish level of anxiety becomes intolerable and overwhelming. Your DS is also at the age where anxiety increases, in teens and at puberty.

Many children who've managed up until then just cannot cope.

Psych buggered about with Risperdal before hitting on the right SSRI for my DS. It takes the edge off and allows him to function, although some days his OCD is still very noticeable.

I was very anti medication but it was the only option.

He's been on medication from age 15 (now 23) and is now on the waiting list for CBT.

That sounds so much like what is going on WetAugust.
I think hormones, a class containing a couple of children he struggles with and his much loved brother leaving home has pulled the ground from under him.

I agree with WA and tbh it is definitely a discussion I expect to have about ds1 at some point.

I will be accepting meds for him I think; having fairly recently been prescribed some myself (and it does say probably ASD in my notes at the GPS apparenlty!) the anxiety levels dropping has had a huge effect. My phobias have become manageable, I can pick up a telephone, I don't have twenty panic attacks a day. My life is worth having again.

Now, I know Pagboy is far more affected than I am but i'd give it a shot tbh: the possible bonuses are more than enough to go for it.

A lot of kids I know with ASD seem to be sliding backwards atm: I;d hazard a guess the lighter nights combined with changing seasons and what that means for clothing etc is linked but obviously can't say for all.

They will probably try to give him Risperdal (Risperidone) as this seems to be the universal cure-all for all adolescent MH problems. Children in DS's unit at the hospital were prescribed it for conditions as varied as anorexia, depression and self-harming, as well as ASD. Risperdal is an anti-psychotic medication. ASD and anxiety is not a psychosis - anxiety is a neurosis.

Risperdal turned DS into a very anxious zombie. So I stopped giving it to him. One the UK's ASD experts is actually local and I was given some slides that he has presented to local health care professionals. In them he explained what I explained in my last post. His recommendation was to treat with SSRI - so that's what I asked DS's psych to try.

The effect was almost immediate - within a week and has been life-transforming.

If / when your DS is prescribed meds, don't be wary of asking them to be changed if you feel there is no positive benefit or he's becoming zombie-like on them. Different meds work in different ways and it's just a matter of getting the right one to balance the chemical imbalance that is causing the anxiety

Best wishes

Re cbt I would agree with wetaugust that the child needs to be able to reflect on their behaviour and compare their own reactions in different situations. So still possible in theory but would be limited by communication difficulties.

Great info. I am going to try and read up a bit before I go so that it isn't another swathe of info about which I kniw nothing