possible aspie

[joshsdad06]

This is a day in the life of J, from the perspective of us, his parents. I have inserted ‘(Good)’ into the title as I have chosen not to include one of what we term as his ‘episodes’.
I have tried to be factual, and avoided describing our feelings or moods, although you may surmise we try to maintain as calm and level as we can, especially during moments we judge Js’ anxiety levels to be high.

A (Good) Day in the Life of J
Having woken at 3am to go to the loo, J then goes into Mummys’ room instead of returning to his own. He asks Mummy if he can get into her bed. Mummy, without waking up properly mumbles a reply so he climbs in. From now until 6.30, he will ask her a question as often as every half hour. Questions such as “Who is taking me to school this morning?” or “What are we doing today?”. At around 6.30-7 Mummy will tell him he can go downstairs for some breakfast.
His favourite breakfast, rice crispies are always in the cupboard. However he may decide he’s not hungry and refuse to have them. He used to eat a bowl of porridge, 2 slices of toast followed by fruit such as grapes or strawberries and a yoghurt but he hasn’t done this since summer 2014. So today he is offered toast and strawberry jam (an old favourite), and eventually, after much cajaoling, he eats ¾ of a slice, while repeating the words “not hungry” over and over.
Then it is time to get dressed. But today his response is “no, don’t want to”. He has to be corralled into doing it, sometimes a ‘race’ is suggested: “who is dressed first?”. It’s a good day, he has gone along with the game.
He is then asked to go upstairs to brush both his teeth and hair. He Ignores this request, choosing instead to continue playing with lego on the living-room floor. At 5 or 10 minute intervals this request is repeated by Dad as well as Mum. 20mins later Dad calls again for him to do these things to which his reponse is to scream “I am, I am, I am !” as he stands to go upstairs. Its’ a good day as he has decided to go up and do them.
As with many little boys he will often lie about having cleaned his teeth or spend only a few seconds doing them.
As time to leave for school approaches, he becomes steadily more manic, making jokes and giggling rather than getting ready. It’s cold outside so when asked to put his coat on an argument ensues with him insisting he doesn’t need it/ its’ uncomfortable/ he doesn’t want to. Today is a good day as he does at least agree to take it and picks it up. Mindful of his asthma, and with time running short, Mummy physically puts his arms in it, at which point he becomes sullen. This quickly escalates to him shouting “You hate me, you hate me, you hate me”. By now it is out of the question that he will put his own shoes on, so Daddy sits him down on the stairs and puts them on for him while he kicks his feet up and down to make it more difficult. His jumper (he only has a t-shirt under the coat) is put into his bookbag so he does at least have it with him.
Mummy says “O J, come on, you need it on, we must go now”, and she guides him by the hand out to the car. Daddy is standing nearby so he reluctantly allows her to lead him, if Daddy was not he would otherwise have run away.
In the car, for the 5minute or so duration of the drive to school he asks for reasons why he couldn’t walk or cycle there; “There wasn’t time and I’m going straight on to work”. “But why couldn’t you walk back for the car then go to work?”, “There isn’t enough time J, I’m already starting late”, “But we could go in earlier then?” and so on. No answer is satisfactory. He is kicking his legs up and down the whole way.

Mummy arrives at an after school crèche (he attends 3days each week). He runs and hides when he sees Mum arrive, and requires several minutes of gentle persuasion to go with her. Today is another day where he has decided he won’t get in the car. He runs around and around the dark car park until eventually he calms a little and gets into the car. Mummy says “What was your favourite thing you did today?”. “I can’t remember”. “Ok, what’s the best thing about today you DO remember?”. “Oh Mum you are stressing me out”. His tone is condescending, “Can we go to McDonalds?”, he knows the answer will be no as he has rarely / never been there from Kids Club. So when he gets the inevitable “no, sorry, there’s a nice dinner at home” he can then moan and complain.
Once home he will normally be allowed his school-day allowance of 30mins on his tablet which seems to calm him. Mum keeps him informed of how much time he has “15mins left J”,”5mins J”. Its’ a good day so he turns it off when asked without complaint.
Dinner this evening is sausages with mash and sweetcorn. All favourites of his. He eats half before starting to complain and eat slowly, picking at it. On a good day like today, Mum offers his favourite yoghurt IF he finishes his sweetcorn and it works, he clears his plate under protest asd he is full. Once he has eaten the yoghurt he asks for another.
Upon learning it is nearly bedtime he is suddenly hungry. He is allowed a cereal bar and glass of milk while in bed. He doesn’t want to put pyjamas on, Daddy says he’ll race as he is putting his on too which works on a good day such as this.
He becomes manic, joking and running around rather than cleaning his teeth and getting into bed. Dad explains this isn’t appropriate behaviour for bedtime and he should be calm/ needs to chill out etc.
Its’ Mummys’ turn to read his story for anything up to half an hr (Alice in Wonderland tonight), throughout which he fidgets and plays with the soft toys on his bed, rarely looking at Mum. He interjects with questions and giggling, Mum only pauses to take a deep breath and carry on. He knows any discussion is after she has finished reading and is kept brief by her, else he will be talking for hours.
Mummy then sits in her room with both bedroom doors open, perhaps working on her laptop or doing ‘brain training’ on her Nintendo DS. He gets up to the loo 3 times, before settling to sleep an hour since bedtime story finished. On other nights he will go to the loo 6 or 7 times and to sleep 2 hours after bedtime story. But not today, because today was a good day, in the life of J.

Written by M, J’s Dad, approved by A, J’s Mum.

There is obviously a lot of demand avoidance going on but AS / HFA is far more than this. How is he with social interactions? Does he take things literally? Can he explain his feelings or just go into demand avoidance. You description did remind me of getting ready to go to school with ds1 and ds2 a couple of years ago and they both have an AS diagnosis now.

Have you raised your concerns with school although often HFA /AS is not picked up by teachers unless you have a chair-throwing type?

If you want to pursue an investigation then the best route is via your GP - perhaps write a list or diary - of the behaviour difficulties first as they are more likely then to take you seriously & our GP also wanted documentation from the school before he referred to the Community Paediatricians and CAMHS.

Hi J's dad and welcome to the SN board.
It is clear that you are worried about your son! Does he have any difficulties at school?

If that is a good day, what is a bad like like? I am asking that because that is what a paediatrician would ask if you had an appointment!

Parents rarely ask for help because of their childs good days!!

Well lots of that looks very familiar! I have an 8yo son with diagnoses of sensory processing disorder, anxiety, and ASD with a PDA profile.

It sounds like there is a lot of anxiety going on there, with associated reassurance-seeking, control-seeking, and demand-avoidance.

How old is your DS? How is he at school? Has he been assessed by anyone?

J's parents - well done for doing the job of describing a good day, and for noting the change since last summer. And for some amazingly patient parenting.

My relative was like this - it was explained by the expert Educational Psychologist as the dear lad becoming increasingly frustrated with unmet needs.

So if you were wanting to know if folks on this board think you should be seeking help, I for one would be giving you a BIG FAT YES.

I tend to recommend independent experts if you can afford them, starting with an EP - a good one. If this is something you can buy instead of a second car or a holiday, then I can say that when I wanted support, that is what I did.

If not then you can look at Bedgebury Foundation if you live in Kent/Sussex or NHS EP.

Remember early intervention is the name of the game, and so the received wisdom is to ask for help tomorrow or sooner.

And don't let it get you down. My relative is now 20, totally calm, completing college and looking at work in woodwork/bushcraft. It took time and special school in his case, but every child is different.

You have made a great start

ok, sorry I posted this in 2 different sections. Thank you for your supportive posts. The reply I posted in the other thread I have pasted below will hopefully fill in some of the gaps;

Sorry I've not had time to reply, Monday was a bad day. 2 episodes, one involved running away rather than go to school, the other him screaming, swearing profusely, shouting things like "you hate me, you hate me" repeatedly.

To all those who have mentioned a 'lack of boundaries', his Mum has two grown up children (as well as childcare experience in nursing) who I helped to bring up. They were 4 and 9 when her and I got together and we were together 11yrs. They are now both in their twenties and are well-adjusted, 'normal' adults, in whoms' upbringing I am proud to have played a key role.
So I am well aware of the importance of boundaries, and in fact my style of parenting tends to be one of strong disciplines or 'strict''. I have had to adjust as this style simply does not work for J.
J has just turned 8 years old. He has a very advanced vocabulary and holds conversations with adults, asking intelligent questions and adding his own information if it is a subject he knows about. In fact he mixes better with older children than those his own age, as his peers sometimes regard him as odd partly perhaps due to his use of words they don't understand. Unfortunately at school he gravitates towards a child in his class who is diagnosed ADHD and they bounce off each other, often getting into trouble.

We moved him last summer to his current school as we felt his needs were not being met. We have subsequently learned that his old school (3 adults) routinely lifted him and removed him from the classroom by his wrists and ankles before dropping him once they taken him elsewhere. The assistant senco and school counsellor were also heard to shout at him loudly enough ("you don't scare us") to make a teacher in an adjacent classroom jump.

He has been under camhs for the last year and a half, and unfortunately our experience of camhs has echoed some of the less favourable forum posts. They diagnosed 'insecure attachment'. His behaviour and tantrums have worsened during this time. Our instincts are also telling us camhs aren't helping. They have been unreliable (3 times we have arrived with Josh to find his counsellor 'on leave' or the appointment not made including one rare appointment (we had 2 during this time) at which the consultant child phsychiatrist was attending when we were told, in writing to be there at 3pm but the meeting had taken place at 2pm. When his appointments were on a Friday afternoon, his counsellor was 'on sick leave' on at least 6 occasions.

At school his tantrums include hiding under tables, chair tipping, tearing other pupils work from the walls, using very bad language and generally running amok. These have been brought under control recently with his being allowed to run to the loos to calm himself before explaining to an adult (usually the TA who has been allowed to spend a lot of time supporting J).

We saw his gp last week and she has refered him for full CDC assessment.
When I detailed some of his 'symptoms' the gp said "it sounds like there may be some aspergers there"

I know the day in my original post may sound grim, but in between the demand avoidance and tantrums we do have lots of fun. Laughing and joking (I frequently have to explain sayings to him as he takes things very literally), and I play lego or on his tablet with him.
He can sometimes flick from one extreme to the other in seconds.
The 'race to get changed' is more often used to get dressed for school or on the weekend. Its really a distraction technique. Keeping him calm at bedtimes is a major battle. We read to him almost every night and always have done.
The SEDB team have been really good and play an important role in communicating ideas to the school teachers. Social Services have referred us to DBit, who, in their short period of involvement have helped us enormously.

On the whole I think things are moving in the right direction, although every day is still a challenge.

Ok, with those extra details in your update posts, your DS sounds even more like mine (in fact I had to re-read carefully to check you're not my DH posting about my DS! Same age, same initial, spookily similar-sounding in character and behaviour.)

Has anyone pointed you in the direction of a) Ross Greene's book "The Explosive Child" (good for Confirming what you are already finding - that traditional discipline is not necessarily the way forward);

or

b) material on PDA? This series of YouTube videos is a good start on the latter. I wonder if you have already read up on PDA as the "competition" you mention re getting dressed is one of the suggested techniques for dealing with demand avoidance, as is distraction, humour, and negotiaton/ which it seems as though you may be using also.

Even if PDA isn't the right dx for your son, there is a lot in there that would be useful for any anxiety-fuelled demand avoidance - which does come across quite strongly from your posts.

Oh and I'm guessing the other place you posted wasn't in SN, and you got lots of "you need to come down harder on him" type replies?

thank you Jacksterbear for your reassurance; this is something I really value as my family is very 'old-school' (and so, unsupportive, at present). Thankfully Js' Mums' family are being fantastic.
I've not heard of "The Explosive Child" and although aware of it have not looked at PDA. This is all new as I knew next-to-nothing about austism until less than 2wks ago. Not so much as learning curve as a vertical climb !

And yes, I had several replies to the other post along the lines of there being a lack of discipline. In fairness until about 2yrs ago I would have responded in a similar vein.

Wow
Ross Greene's "Explosive Child" is brilliant
We (his Mum and I) are working through it, with, I should add, DBit's full support.
Regardless of future diagnosis, it feels like it is hitting the nail squarely on the head
Thank you

Good Luck J's parents.
Keep on these boards for support.

Lots of what you describe sounds like ASD

Since I first came across ASD years ago, there has been a lot more work on sensory issues. It used to be understood that some kids with ASD would put their hands over their ears to block out noise, but now we see more detailed explanations with some senses avoided eg my relative who wears t shirts inside out as the seams irritate her skin, and some senses actively sought eg deep pressure.

I hear that there is some recent research that reports good results from vestibular resistance work - which translates as pushing weighted doors or doing press ups against a wall (assuming full press ups are over the top) to help maintian a calm-alert state to learn. I heard of one kid who could happily concentrate for an hour as long as he could get up and do a few press ups every so often.

This is early days for you and J, so unravelling
(1) pent-up frustration from
(2) unment needs, from
(3) ADHD, from
(4) sensory overloads
is going to be a job for you and the experts, but I just get the feeling that reading up on sensory issues (or getting help from a good sensory OT) may help you find some techniques that help you and ds sometimes

Good Luck

My ds does not have a ASD dx (although I think he will one day) so I don't feel able to give any ASD advice.

But I fully get what you say about having strong set boundaries implemented in a non traditional way. That is how my family live in harmony. If something works then run with it and ignore all who disapprove. I have confronted my ds in the same way I confront and discipline his older sibling. I though I was going to have to call 999 that day. That day changed our life's. I have still made him live to the family rules but I changed how I tackle him. I have never had a day like that since. He is a well mannered polite kid so whatever, it works.

Be kind to yourself. You and mum sound like fantastic parents and just what J needs. It's all a learning curve, like raising any child you never stop learning.

I like to think of my ds as a square peg in a round hole. DS is not required to change his shape, its the round hole he is in that needs to change to fit around him better.

Much of your 'good day' sounds like a 'good day' here too! I have a 10yomds about to be assessed for AS/ASD. He is also one to hide under the table - or anywhere really when he's stressed or upset. He also does the toilet thing at night too! Ive not met anyone else who talks about that.
I get told im pressurising him and stressing him out when I ask him questions. However he's likely to want a 3 hour discussion chat when he's been told to get his shoes on for school or something.

So yes, there are similarities, it's worthwhile following through the assessment process and trying to shine some light one the route cause.