Dear God, I need help :-(

[LovelyLovelyWine]

DS (7) has AS. He has terrible behavioural problems, violent temper, complete refusal to submit to any kind of authority, constant angry outbursts.

I am at my wits end.

He has a Statement. He has a place at a resourced provision, where frankly it is a miracle he hasn't been excluded due to the level of violence against staff and other children.

He had a year of psychotherapy with CAMHS, which didnt have any impact at all, and is now having weekly sessions with a psychologist who also advises the school and works with us. He has weekly SALT for social communication issues and we are trying to get him OT, too. Nothing seems to be working. he seems to be getting worse.

I know he is young. I know there is time to help him overcome these issues. But good God, I am tired and despairing. I feel like the worst mother in the world. I am worried about the effect his behaviour is having on our younger child. I am frightened he will be excluded. I am fearful for the future.

Tonight he punched me, told me to fuck off, threw his computer across the roo and spent an hour screaming and trashing his room because he didn't want to go to bed. Our neighbours came over to complain and it just felt like the final straw. We are completely ostracised as it is - have lost family and friends over his behaviour.

My poor boy, why is he like this? What can I do to help him?

Keep posting, you're not alone.

What support are you getting? Are you in touch with the NAS, parent partnership etc? Do you have family support or any respite?

DH is hands on, but works away from time to time. My mum is here most days and is terrific, but even between us we struggle to cope with DS's behaviour.

We attend an ASD families group once a week, which is great, but none of it touches the surface really.

I just feel unable to cope sometimes

Hello my lovely.

I have a similar child, he is 12 now and at a specialist AS Base. It is hard.
We also ahve 3 other boys (all who have various degrees of SN) and I completely understand how you feel about it affecting the other child.

First of all, tell your neighbours to Do One. If someone can;t have empathy for you all in this situation they are not worth listening to. If it is a LHA house contact the council and complain.

Can I ask what interventions you are using?

Feel that you have lost family and friends over this. Although maybe the term 'friends' should be used loosely here .

And don't get me started on your neighbours. Why is ASD so hard to understand.

You are under an awful lot of strain lovely, I have a ds with disabilities too, but behavioural problems are so hard to deal with, I'm amazed at how much parents like you cope with.

Talk about it, get it out of your system. Your not dissing your ds, you need support.

Actually, I have sympathy with your neighbours. It must be hell having to listen to that and there's nothing they can do about it.

If the behaviour is as extreme as you've described than I would call the Police. That may be the shock that's required. It also registers the difficulties you're having.

At the momment noithing positive seems to be in place and this sort of behaviour cannot be tolerated indefinitely. It may be that a 24 hour placement is starting to look like being needed. If so you need to start gathering your evidence very soon - Police report is one way of registering that evidence.

can he tell you (out of the moment) what is triggering the anger?

Is school awful? (he doesn't have to go, legally - maybe removing that trigger would really help? [disclaimer - we home educate])

Is it the way your family functions? Maybe you are quite punishment-and-rewards-y-authoritarian? Or maybe you are completely woolly-liberal? Whichever, maybe it's not what he needs

[I am at the non-authoritarian, try to treat all family members as equal partners end of the scale, largely because that's what my family thrives on, and that seems to make it easier for the children to accept authority from other people - because they know there is a safe space in their lives where they aren't bottom of the hierarchy. I know other families where one or more children have an autistic spectrum disorder where clear lines of parental authority and boundary setting make the child feel safe - it's a matter of going with what is right for the child not trying to follow the societal norms, necessarily - whatever you end up with it is highly unlikely to look conventional]

There's a bit of me which wonders whether you can either remove your part in triggering the anger, or remove the trigger more systematically. If bedtime is a trigger, then taking school out of the equation (if you can look after him in the daytimes) means that 7 a.m. wake ups are unnecessary, so strict bedtimes are irrelevant. Or taking your anxiety about how many hours sleep he needs out of the equation might help - many children astonish their parents by how little sleep they need. Or if he doesn't get enough sleep and is tired next day, then that gives actual evidence with which to have a conversation about bedtimes.

I don't mean to sound smug and preachy at all - it just occurs to me that there are various ways you can tackle this, so I thought I'd throw some of my more lentil-weavery ones out there :-)

OP, what's he like at school? Do they have the same levels of the same behaviours?

And is he on any medication (eg risperidone) and would you consider that as an option? Whilst Wa has a point if nothing ever changes, there are certainly interventions- chemical and otherwise- to try before a placement, and even then with my own son I looked at a Monday-Friday Priory one in preference to a 24 hour one. It's always possible to go for a higher level of input towards the 24/7 model but very hard to retreat from that.

Sounds like you're having a really tough time. You need to look after yourself through this, to keep your sanity and also so that you can be strong for your son.

I'm not an expert - but would it be helpful having a social assessment of your family's needs- to see if you could be provided with further support? Perhaps you could even ask for some respite care for brief periods. It might also allow you to spend some time with your younger child.

Take each day at a time. Enjoy and savour the good times. You sound like a very caring and loving mother. He is young, and hopefully with the psychologist support things may begin to settle.

Have you told your neighbours about his dx? If you haven't, it might be helpful to - although it's 'none of their business' it is really if it's impacting on them and they may be more understanding of the disturbance?!

I don't have any other suggestions really - just a hug and some virtual support.

You poor thing. A few random ideas (apologies in advance if you've tried em all and I sound like a suck egg preacher).

www.ambitiousaboutautism.org.uk/page/what_we_do/training/training_programme.cfm

These guys do standard courses on challeging behavior ABA style or even bespoke training. It might be worth enquiring about some bespoke training for yoursef and school.

Are there times when your child is better behaved? 3am on a Tuesday or during school holidays when the day is very structured/unstructured. Have you been taught to do abc or star analysis & a diary to help identify triggers and when things are good? Even if it's just 5 mins a day when things are good - you can take note of what's happening in those 5 mins and use the environment, timing, activity(or not!) to build on. Look for good triggers as well as meltdown triggers.

Has your child had a full sensory assessment by someone who REALLY knows their shit? It took me years to work out my child cannot bear noises of a certain pitch and they send him totally doollally. For your child it might turn out to be scents or bright lights etc. I personally think sensory issues are the "poor relation" of ASD education, management and training and are often overlooked to the detriment of the child who may be responding to something in the environment that feels like torture. Phone the OT and tell her to pull her finger out pronto! See your GP and demand your child is moved up the list as an urgent case.

In my area Cahms are clueless, (though they like to talk a good talk). They coudn't get their heads round the idea of an articulate child not being able to connect with his own emotions, & nearly wrecked my family with their pyschoanalytically based assumptions. Autism outreach though is great but chronically overstretched. Are the professionals coming into help REAL experts in ASD or more generalists? If they are generalists it's time to work with school to call in the cavalry. You can ask for an early annual statement review to facillitate this, or even a full reassessment.

Have you tried the GAPS diet? (with behavior this extreme perhaps just GF/CF is not enough).

Does he get a good night's sleep? Again this is a major issue with my own son. I've yet to meet a kid who wasn't a brat when overtired, ASD just making it worse. If so could you medicate if nought else has worked?

What's REALLY happening at school on a day to day, hour by hour basis. Go in and observe for yourself unannounced- be nosey. Are they really following professional advice or is someone dong things the way they've always done it with the best of intentions once the experts have left the building? (This is sady very common).

Have you been taught a range of appropriate restraint techniques? The lea run courses for teachers and TA's - insist you are given a place on one so you ca protect your younger child when needed.

The latest thing I've heard of is Yoga for Autistics - apparentely it's supposed to help with a range of issues from impulse control to delayed gratification and co-ordination. I'm about to try it in my quest for a decent night's kip.

Have you tried any of the recc'd strategies for PDA as opposed to AS? Might be worth calling the NAS to see if they can give you some advice as a starting point to assist with the demand refusal stuff.

Would you be willing to approach SS for some respite? Or even someone to take the NT child occasionally to give them a break? Direct payments coud help.

Is he in a genuine ASD unit or an EBSD placement? AS kids sadly are often shoved in EBSD units as noone knows where to put them and these are really unsuitable due to the AS child's desperate need for appropriate social peer role models. Basically he could have fallen into a pattern of mimicing the most extreme behaviors he witnesses at school, (as chair throwing will catch his attention - combine that with AS obssessions and you have a disaster).

Lastly all ASD units are NOT alike -go look see what else is out there. I'm not the only one on this board who has been shocked at the variation in provision both good and bad. I think one poster visited 30 or so schools before finding the best fit recently.

The neighbours - get some cards from the NAS society and then politely hand em out on the door step without saying a word. Just pass them the card and shut the door. If it helps pop a notice up saying "Please do not knock between 4pm and 8.30 am". Last thing you need in the middle of a meltdown is the village ijeets on your door step! If they persist after that tell em to do one or you'll call the police for harrassment.

Sending you a virtual hug and a

Thank you so, so much for all you replies. I will try to answer them all.

Peachy, I got your PM and will respond later today - thank you so much! But in a nutshell, the only real interventions so far are behavioural psychology and SALT. I just don't know what else we can explore? I did lots of research myself into ABA and I wasn't convinced, but right now I am desperate and willing to try anything. I am looking in to art therapy and yoga, and he has recently started martial arts, which he enjoys so far. I will try anything that might help him .

Thanks, madmouse . Our neighbours are lovely and do know about DS's diagnosis and issues, but they are old and not too well and I am sure it is hard for them to have the banging and shouting going on. So the neighbours aren't in any way in the wrong, but I am very sensitive to losing people's support, I suppose. We have had years of being isolated because of DS's behaviour, and we have had a major rift in the family recently over it. Too long to go into here, but he was treated shockingly. Yes. he is a very challenging child, but to see a group of adults who ae supposed to be his family gang up on a 7 yr old and then basically disown him is very hard to see when you are his mum

WetAugust, believe me, I have thought many times about calling the police! I have threatened him with it, and with SS (not proud of that at all ). But I just can't do it to a child so young. Ditto for a 24/7 placement. I can just see it damaging him even further.

ommmward - his trigger is submitting to any kind of authority. If he doesnt want to do something, he will kick off. It is almost pathological. Honestly, it isnt just a badly behaved brat. He has a knee-jerk response to any command, and it doesnt matter what language you use, if you distract him or get him to do something he doesnt want to 'without reliasing he is doing it' - doesnt work. He is as clever as a fox, and if he decides he isnt gong to bed, that's it. He isn't. This happens at home and school. He is worse at school, though - at least the the behaviour is more frequent.

He absolutely hates school, but home education just isnt an option. I work almost full time,, DH runs his own business. There is no way we could afford to stay at home with DS, and t be honest, as awful as it sounds and as guilty as I feel about it, I think it would drive me completely mad to be with him 24/7. I have had depression in the past and I never want to go back there. Having a career and a lif away from DS - as bad it sounds - keeps me sane.

I will come back in a sec and respond to the other posts!

Ah there's quite a lot we can work with then, sure we can help.

Have to go feed ds4 now but will look out for your pm and post here later.

Dos he have pathological avoidance syndrome?

Has he got a dx of anything other than AS?

I would look into other ways of helping him...there are lots of things you can do.

OK, back...

Peachy - no meds (yet). I have been so against it, but am starting to think anything is worth a try. When he received his AS diagnosis (at 5 yrs), the Paed said she could put a ADHD diagnosis as well - she actually asked if I wanted her to write it down on his official diagnosis - but that she thought his autism was the primary issue, and the diagnosis that would draw down the most support. We were offered ritalin, but I refused. I am willing to rethink it, now, though, Actually, his Psych thinks a reassessment and diagnosis at some stage might be beneficial, to look a what his other issues are.

Polkagirls, thank you . I am quite worried about getting SS involved. Without giving too much away about myself, I work in partnership with SS in my every day job and I have very little faith in their ability to provide the right support in our case.

Thanks for the hugs Chipping

bochead, thanks for taking the time to give me such a detailed reply. I appreciate it more than you could know.

I will definitely look at the training courses at ambitious about autism. Ditto the restraint courses. The school are all trained in restraint techniques, but I hadn't ever thought that we might need some training, too! Doh! He is a huge boy for his age - the size of most 11 yr olds - so this will be very helpful when he becomes physical.

He hasnt had a full sensory assessment, no - just the usual OT assessments leading up to diagnosis, which didnt really come up with anything. How could I find out about someone who would do this well?

CAMHS in our area is pretty useless too. His school is on the edge of two boroughs, so they have referred us to CAMHS in another borough, but to a centre with specialism in ASD. Initial signs are encouraging - the Psych is a lovely woman and seeks advice when she feels she is out of her depth, rather than pretending to be God, which the previous Psych did. She has also got an Ed Psych involved, who is working with the school, which is a miracle, seeing as the Ed psych in our borough has seen DS precisely once in 3 years. It is early days yet, I suppose....

I dont know about the GAPS diet? Could you explain more?

He has always slept 12 hours at night, but in the last few weeks he has started to refuse to go to bed and isn't going to sleep until 10 or 11pm. He is exhausted in the morning, though, so I know this isnt good for him. It is also affecting m ylfe badly, as the evenings were the only time I had to unwind and get some perspective, and are now spent trying to get him to sleep.

Re: his school - his unit is atached to a MS school and is for Autism & Speech, Language and Communication difficulties. He is by far the most extreme in terms of behaviour, but also by far the most able (reading appropriate for Year 8, Maths level at Year 6 levels). We were very happy with the provision in the first year, but there have been staff changes and we are no longer happy with it. They are completely out of their depth and there seems to be no therapuetc approach at all.

There are two other ASD units in our borough and I visited and hated both of them. They werent in any way appropriate for children with AS and I have no idea where to start to change his school place. I despair of any school being the right fit for him

Finally, on the issue of our attitude towards him, I would say I am on the firm end of liberal, DH is more firm. I have tried both approaches over the years, and neither works . If you are very firm he just rises to the authority and challenges it. Believe e, he will pursue getting his own way for hours and hours without deviating from it, no matter how firm we are. The school have this problem, too. If I am liberal, he takes the piss, to be frank. I feel we have been extra careful to be consistent with him for the last year or so, and work with the school so the strategies are the same, but his behaviour hasn't improved at all and he seems unhappy a lot of the time.

OK, I've waffled on enough. Back later! And many thanks to all who replied. It feels good to know there are at least some people out there who care.

It sounds to a layman like you need some pda specific stratgies. There are some really clued up Mums & Dads on this board re pda and the NAS will have some advice.

Have the LEA employed the cheapest to replace the experienced staff who left at his current placement? So often bean-counting takes priority over real expertise Is it time to look at out of borough and independent placements?

Gaps diet:-www.amazon.co.uk/Gut-Psychology-Syndrome-Depression-Schizophrenia/dp/0954852028/ref=sr_1_1?ie=UTF8&qid=1335862622&sr=8-1
You could also research the Sunderland protocol and the Brain food plan. I feel the GAPS book explains the science behind nutrition and the brain best, you don't have to go the full hog as sometimes small changes can make a huge difference.

I researched PDA a while ago and it rang major bells with me.

Is it possible to have a dual diagnosis of AS and PDA? My major concern is that the autistic diagnosis draws down more funding and more support. And PDA seems to be so misunderstood - a clinical psych friend of mine even said it is a 'bullshit diagnosis' which masks what is really going on .

The school have struggled to recruit. The head of provision was amazing when we DS first started, but they have had several staff leave (not for dodgy reasons - DS's two favourite TAs left to pursue teacher training, for example). The new head of provision is out of her depth, definitely. There is also a new head of the MS school, who I a meetng with tomorrow. The last Head was a wonderful, supportive woman, but the Deputy who acted up for a year while they were recruiting is awful - just accusatory and nasty. It has been a rollercoaster ride for us as parents, let aloe for poor DS.

I am thinking that yes,itis time to look at alternative schools. I just dont know where to start

Thanks so much, bochead.

I moved my ds1. Scary, but the best thing I did.

I dont follow the GAPs diet but ds1 does have a high protein/low sugar and additie diet and supplements (EPA fish oil and zinc and mag).

It has made a massice difference.

Thanks Becaroo. I will definitely look into the diet and supplements.

I have done a lot of reading on PDA this morning and it describes DS's difficulties to a tee. I have decided I am going to meet his Psychologist next week and discuss. I am also going to look in to other schools or some sort of provision for him. No idea where to start, but maybe I'll give NAS a ring.

Thanks for all your support, everyone.

Have you considered medication of some kind? I also have a very severely affected ds and a few years ago was a wreck due to not being able to cope with his violent behaviour and anxiety. Whilst we still have plenty of issues, ds starting on risperidone in my view has enabled us to continue looking after him. I honestly believe that without it he would now be in a residential school or our family would have been split up. I know it isn't the answer for all but it might be worth considering.

cansu - I have considered it yes, but he seems so young . I dont quite understand how these drugs work, either. Is risperidone an anti-psychotic drug?

Hi lovely, no advice i am afraid but just to say you have come to the right place for support from people who know what you are talking about.

Good luck and be kind to yourself.

How did you get the dual diagnosis, Hothead? PDA doesnt seem to be taken seriously by the professionals I know

Hi there. So sorry to hear how difficult it is.....
Have you ever used positive reinforcement (one of manay ABA principle) to reward your child, ie give him the things he really likes when he is really good?

Also, for the sensory need, try to contact an OT that specializes in sensory integration. You could always try deep pressure massages (if he lets you), lots of swing in these big baskets in playground (horizontal movements have a calming and organising effect). Another idea, a trampoline (or a gym trampette) to provide some stimulation and physical exercise at home.

Sorry if i am naive on this, but I thought it was worth saying this.

Take care, all the best to your familly