five year old finally got AS dx - need advice

[benjaminsmum]

Hi, I have suspected my just five year old ds as having ASD since he was barely two but always been told he not that bad. He started school in Sept and some issues were arrising there so I asked GP for referral to hosp. Had first appointment last Tue and he beautifully displayed most of his behaviours in the two hours we were there resulting in the consultant giving dx of AS. What I would like to know from others with experience, ie you lot, how much leeway do I give him to be flappy, not wanting to share, basically having his own way to prevent meltdowns. Part of me wants to give in because he cant help it but another part thinks he has to cope in the real world so the sooner he learns the better. I also have a two and half year old ds and new ds due in three weeks so trying to get way forward fixed in mind before I have three to deal with! Thanks for reading this.

Just wanted to say Hi. My son is only 3.4 so I can't really give any advice that would be appropriate. We try and give as much warning as possible to DS1 as a flash point is what he perceives to be sudden changes and we try and squash flat any hitting etc by a very short time out (he hates to be ignored so its only about 30 seconds that is needed!).

Hopefully someone more experienced will be along to help soon.

Hi benjaminsmum - please get an appointment with CAMHS. Please also do not have thoughts of the "real world" with a diagnosis of AS. It is a hard road that you have to tread. Take a few steps back. Your response is identical to that of a friend of mine in your situation. My friend is now in total despair. Her DS has been excluded from school for 3 weeks out of the last 6 due to his "flappy" behaviour and his inability to cope. He has ADHD, fine and gross motor dysfunction and Aspergers Syndrome.
Mum has belatedly agreed to talk to CAMHS. In my experience they are really professional and experienced - my DS had Selective Mutism and CAMHS sorted this within 8/9months.

Mine are still young (8yrs & 6yrs) but one thing that I would advise is to pick your battles carefully. I think that expecting your ds to follow the same rules as NT children could potentially be disastrous and far more stressful for everyone.

I would first decide what your own personal boundaries are and which things you won't compromise on. If there's something that needs to be changed I've found that it works best if it's done quite slowly, eg with social stories, timers, visual clues, re-direction or whatever method works best. Working on just one issue at a time is something that works best for my two. Too much change would overload them and ds2 in particular would just shut down.

From the examples of behaviours you've given my personal list would be something like:

Flapping - not a problem but might at some point in the future try to re-direct him to something else depending on when and why he does it.

Not wanting to share - something I would work on gradually, particularly with having two other children. Maybe social stories and build it up slowly from there.

Wanting his own way - depends on what it is that he wants. Maybe pick one particular issue, try to work out the cause (sensory, routine-based etc).

That would be my own personal approach but obviously yours might be different depending on what you and your ds need/want.

Best of luck with the rest of the pregnancy and the birth. xxx

Benjaminsmum, good advice so far from the others. For us (me being an adult with an ASD who has many memories of being a child of that age and trying to cope...) it's not a question of us learning not to be autistic so that we can cope in the real world better. It's a little like anyone asking someone who is blind to just learn to see as that will be easier, or asking someone who is deaf to learn to hear as that will be less of a problem for them. We can't just stop being us, alas, as much as we can see that it would be important and useful for others if we were just like everyone else.

The flapping is how we sustain ourselves through really stressful circumstances and stop ourselves from shutting down/having a meltdown. It also lets us 'feel' where we are in relation to other things, which is really difficult to explain to other people. I guess it's a little like a white stick is for a person who is blind - it helps us to rebalance ourselves a bit.

The not being able to share is about 'oh heck, what happens if this person has a turn with this - when will it come back to me, what will they say or do?!' which is all Very Scary Indeed. If we understand what will happen in easy steps and predictable timescales, it's much easier to cope with. So a story saying "If you let J play with that toy for five minutes, (showing them a clock), then J will give it back to you" might be useful. But if it's 6 minutes not 5 minutes you'll lose his trust in your accuracy, so you need to be careful what you promise. We can be accurate to the nearest second (!) and panic sets in very, very quickly if something is promised and doesn't happen on time or in the way described.

Taking good advice and working on how to minimise things over time is certainly wise, but it's a long process, and some things may not be stoppable or improvable.

I'm sure you already do, but if you can, help him to learn how to make the best of his abilities, his skills, things he's good at, and emphasise those. Those are the things that will make the future a very worthwhile place for him, and will help overcome society's surprise at our other eccentricities.

Really hope things go well for you and the new little one...

I have a 5, nearly 6 year old with probably asd.

I genuinely don't know how to make his behavior more neurotypical, I suspect I will never achieve this.

amber, your point strikes SUCH a chord with me about times and accuracy. The shrieking and persistant repetative nagging if lunch doesn't happen at 12pm (when cbeebies says it is lunch time!) makes damn sure lunch DOES happen at 12pm. At school, lunchtime is half past 12, and this is accepted.

With ds1 and his banging (which is a form of flapping, I suspect - he wanders around the house tapping everything.) I send him upstairs when I have had enough. It's NOT because I'm angry, or am punishing him, it's because the banging is driving me crackers and he will not stop. Sometimes if we are elsewhere (rare because this is hard work, I have just realised I haven['t taken him to anyone else's house for over a year ) I will 1,2,3 magic him and it does sometimes work. Distraction sometimes work - I admit I do distract him with food and the television.

Could you teach him to do a less obtrusive flap? Like tapping his foot or drummiong his fingers, or gently clapping the tips of his fingers together? I ask because ds1 only started banging after he copied me banging on the table to make a rhythm - he was very taken with this and now does it a lot# - however I would NOT recommend teaching your ds to bang!

sharing is difficult, you have to be absolutely trustworthy when it comes to gicving stuff back for his turn. I'd drop the idea of trying to share and got for timed turn taking instead. Get an egg timer, they are visual.

He does have to cope in the real worl, but he has to learn to cope on his own terms, and sometimes that might mean avoiding parts of the real world he simply cannot cope with.

Ds1 isn't even formally Dxed yes, just the word of the consultant psychiatrist, and that was recent so I genuinely do know what you are going through.

oooh i can see how you are keen to find a way forward with your boy...looks like you are going to have your hands full in the next few weeks Benjaminsmum
What fantastic advice you have already had ..haven't got much to add.
I would definitely take the slowly slowly approach.Anytime in which ds has been particularly pushed or stressed in one area, we have had new problems in others (ie new compulsions/repetative behaviours)
He would not be able to cope with the real world without a lot of help.
Try not to stress the small stuff..and allow him to do stuff to de-stress in his own environment.If he's anything like my ds he will realise eventually (and with help) that there are limits to his behaviours...he will realise for instance that he can't 'pace' at school but he can at home (i can hear him doing it upstairs atm
Social stories have been a very good tool over the years for my boy as have using timers.(i don't know if you have been using things like this already)
Good luck...it's a tough road you are about to tread...get lots of help!!..CAHMS have been good ...and the my LEA advisory body for autism have been brilliant...also local charities have helped.

Thank you all so much for your advice and words of encouragement. Amber thank you for explaining it from the inside. I think I will have to leave a lot of his behaviours that I have been nagging him about such as flapping and his odd speech as it turns out that is part of it which I hadn't realised. Prehaps I need to worry less about what others think and let him get on with it. It is just a bit depressing knowing that I am not going to be able to go to busy places with the children at weekends and now he is at school that may mean we never go which seems such a shame. Coldtits I am with you on others houses. I can count on one hand the number of times we haven been to any one else, except my parents, or had anyone here in the last year it just doesn't seem worth the hastle.

We have also started on the birthday party scene which is turning into complete nightmare as they are each so different he varies between manic and meltdown. I have wondered about not taking him but he always says he has had fun afterwards and think he may learn with time but wont if he doesn't go at all. I would appreciate your views on this.

Thanks again.

Birthday parties? Eek! I must admit they didn't get me to attend a single birthday party until I was well into my teens, and then for me it was less enjoyable than a hospital visit. But some of us enjoy it more, and it sounds like he wants to try.

The knack will be for the parents of whoever's birthday it is to help with this a bit. Can you visit the location first with him so he can see where it is and get used to it in advance? Can you find a quiet corner at it so that he knows he can escape to it for a while if he needs to? Do the children know that accidentally knocking into us feels more like being punched to us, so they know about that sensitivity? Would earplugs help if he's very oversensitive to noise? Might even be worth trying one of those weighted vests to see if they calm him down a bit (you can get them online).

The more explanation of each thing, the happier we are. The overload comes from trying to cope with a wall of sound, light, movement, social interaction, instructions...and all whilst having no clue what comes next.

It doesn't mean you can never take us to exciting places, it just means you have to go for ones that will help you find a 'calming down' place and help you prepare for it. One really brilliant place is Ironbridge Gorge, for example (no, I'm not on commission ) who couldn't do enough to make it accessible for me, and even phoned me during my visit to warn me of a new noisy event just about to happen there. Some are really 'switched on' to help families with an ASD member.

benjaminsmum,

Slightly off topic here so apologies. I write the following as I note there were some issues in school.

With regards to any additional support/educational needs for your DS I would now seriously look into applying for a Statement of Special needs for him. The earlier you do this the better because school may well become more challenging for him the further he moves up a year. A Statement as well is legally binding unlike other plans like SA plus (is he on this currently?). It would outline his diagnosis and give strategies and extra support to support him in class.

You don't need school's permission to do this and you as parents have far more power than school would in this regard anyway (school cannot apply if the LEA say no but you can).

IPSEA have model letters you can use:-

www.ipsea.org.uk

You are your child's best - and only - advocate.

Oh Amber that is good news about Ironbridge
It's one of the few places (that we havent already been to) that ds seems really eager to go to. (bridges,construction, invention,industrial revolution...need i say more ).
He has pinpointed it from his vast collection of leaflets
We thought we might camp nearby and risk try it in the summer

troutpout - if you want to camp nearby, the sites at Much Wenlock have been recommended to me. Stokes Barn has been tried by a friend and found to be good.

Thanks again for all your info. School have told me he is not bad enough to get a Statement or probably much help at all. Most of the problems seem to arise at home. He manages to cope for most of the day at school.

I'd not take a bit of notice of the school if I were you. I 'coped' at school by enduring it in the same sort of way as you might endure a 13 year long trip to the dentists. Just because he can endure it doesn't mean he should have to, or that this is all he's deserving from a school.

IPSEA are good at helping with SEN stuff and will give good advice about how you can apply for a statement even if the school won't help?

cheers smallholder...that's really useful information! i was trawling campsiteuk last night but couldn't narrow it down..so that's a really good heads up...thanks.

Benjaminsmum...Amber is right...he shouldn't have to 'cope'...with the right help he could really flourish.
Ds's school strung me along like that for a long time saying he wasn't bad enough blah blah blah. At the same time they would be complaining about his 'oddness' (particularly as he went into juniors) and how he wasn't performing to the best of his ability
He now has a dx and funding for 15 hours a week support (no statement)....it has changed our lives.

Thanks. I will arrange meeting with school when I get full report through from the dr. I have to admit it is a bit beyond me how thry say he is ok when at home or out with me he meltsdown regularly. For example yesterday we went to a science centre which he loved as all hands on experiments including a water table which he adored. Of course it was busy and some times he had to share the equipment resulting in a few meltdowns when other children move stuff etc. I physically have to move him away from the other children before he hits them and let him throw himself on the floor kicking and screaming. He calms down quite quick and can sometimes join in with other children after. So why doesn't he do this at school or get in kids faces, with only two adults and thirty kids?

He's probably 'shutting down' at school - just switching off from the overload and going into his own world as a desperate attempt to escape. I used to do the same. But when he's home he's completely out of the energy required to do this, so you get the tantrums instead. What's happening at home is probably a result of what's happening at school, if you see what I mean. Since most teachers have nil experience of ASD training, they haven't a clue what they're looking at and won't spot the danger signs.

sorry to hijack a little but my dd (5) started reception in september and her behaviour is getting worse and worse. She exhibits the behaviour most of the day at school but it does come across athome now and has done this half term aswell. She's very demanding, oppositional, hits and refuses to do things. School have supplied her with a ta fulltime but i think this behaviour gets worse when she's anxious/stressed etc and a 6 week term at school is what is doing this. I also think that it's stillhappening at home because she hasn't been able to unwind yet from school and a week won't be long enough. I'm dreading Monday as she's being so disruptive at school i'm getting cfalled up a lot to "sort her out". The other day i had to stay in one spot on the street with her (and the dog!) for 20 minutes until she was ready to move on as she had had a massive metldown, hitting me ,screaming etc in the street as she hadn't wanted to walk home yet. I find that just being still and quiet and empathising - ie i'm staying here, yes you're staying here helps and then we can movve on but it is distressing and hard work!! She's lovely and funny and very clever and i just want to know how to help her.

I found that ABA helped my autistic DS's behaviours a great deal. Some of it is the autism, but some of it (eg tantrums and hitting) I think has to be got rid of if the child is to have any chance of a decent life (this may be more true of boys than girls, I think). My son also used to refuse to walk down the street, and would lie down on the pavement having a tantrum. In 2 weeks, my ABA tutors sorted it out as follows: let him lie there, but hold his hand so that he is safe and can't injure himself. Look away, ignore, no eye contact, no speech. Nothing. Once the tantrum starts properly to abate, and it could take a long while, resume eye contact and say "great, let's go get an ice cream now you are quiet." If the tantrum starts again, repeat. This can be agonising, but the behavioural concept is that he has to learn that this behaviour (tantrum) got him no result at all, whereas being quiet and walking nicely got him an icecream, or whatever other reward you deem fit. Don't worry if people look at you, they've all seen Supernanny on telly so they know about ignoring a tantrum. I know it's not everyone's cup of tea, but for me ABA was a lifesaver.