help, advice and opinion needed - sorry quite long!

[marymary1000]

Hi there, I am new to this site and am looking for some help on my situation with my ds who is 9.

Ds has always shown a number of traits of asd, delayed speech, restricted diet, social issues, meltdowns etc, he was assessed in 2007 (ed psych, salt, paed) and it was decided that although some of his behaviour was 'difficult' he was not on the spectrum. We did go back to them last year about a couple of points that had not improved and were advised that as it was over a year since he had been seen we would have to start again, school chose to monitor him in the short term.

He is in year 4 at school and his new teacher used to work in a specialist asd unit, and she has suggested that we try and get him reviewed again.

For ease I have listed my sons behaviour/personality

Bright/intelligent/articulate/top groups at school, reading and maths age of a year 6
Loves a cuddle and is very affectionate
Funny, loves a joke, likes to be the clown
Popular with kids at school and has a good social network
Obsessed with football, watching, playing, kits, reading, you name it he does it!
When he plays football in training, in the garden or if his side is losing or he feels he is playing rubbish he can explode or just burst into tears
When he comes out off school, he often has a meltdown before we get home which is a 5 minute walk away
He is very literal, if you say wait a minute he will sometimes not always count it out
He is left handed and during the night sucks his thumb if something has happened the day before
He has spates of night terrors
Needs a good couple of days when school finishes to adapt
Rubbish at waiting his turn and queing
Struggles at birthdays and christmas, meltdowns increase
Struggles with school rules in the playground, and often pushes and shoves
Becomes frustrated with others when they do not follow rules/understand quickly
Can manage his frustrations better at school with no meltdowns, saves them for home!
Becomes cross if he cannot get his own way.

Sorry for the long list but thought it was best to get it all down, i go through stages of thinking he can just be a tricky 9 year old who struggles with certain things or whether there is something underlying. He is an only child so I have nothing to compare, we just get on with things and deal with them when they come up, he is getting better at walking away when things get too much, but it can be pretty obvious

Any thoughts really would e greatly appreciated

Thanks in advance.

He sounds like my Dd3, she is also 9 and was diagnosed with ASD in september. It has taken 3.5 years to get her diagnosed mainly because she saves stuff for home and the school she was at refused to see any of her issues.

FWIW i think if his teacher knows about ASD and she/he is saying go back to the proffs then maybe you do need to.

I pushed hard for a diagnosis in the end because i was worried how Dd3 would cope at secondary.

Welcome to the board and good luck.

Marymary, he sounds pretty high functioning, if it is ASD, which is a good thing. The traits are possibly pointing towards ASD, and without the early delayed speech he sounds quite Aspergersy (made that word up!) He actually sounds a lot like my DS3, except for the meltdowns, who has no DX, I describe him as quirky, but I think he's on the spectrum somewhere. My DS2 has ASD but it was and is bloody obvious and he was DX at 3. I'm not going to push for a DX for DS3, I think he copes fairly well and it wouldn't benefit him.

If things are getting difficult to manage at home and school a DX may open doors to support. Getting some help before secondary is a very good idea, as DC who cope well in Primary can really struggle with the transition to secondary unless some transition plan is put in place. Good advice I've heard on here is to treat them as if they have ASD, it won't do any harm. That is look into the strategies to manage behaviour and ease anxiety, not use it as an excuse!

Sounds like could be ASD to me.

Unfortunately many paeds don't like to label children. Through their own ignorance.

Try again to get him a dx. If he does have ASD getting it formally diagnosed will help him, you and school.

It has taken many people on here years and years to get a dx.

Good luck and welcome to the board.

wow, thanks soooo much for your swift replies!

I am fully aware that even if Ds does receive a dx there is no magic wand.

I would really appreciate some guidance on where to look for help in dealing with the anxiousness and crossness that he experiences, I feel that if we can crack this life would really be a lot easier for him.

Thanks again

That is a hard one. It's trying to work out what the underlying causes are of the anxiety/anger and trying to minimise or anticipate and prepare him for them. Google iceberg analysis or STAR analysis. My DS struggles with waiting and transitions, so I try to have something for him to do (iPod touch ) or give him lots of warnings, 1/2 hour, 5 minute warnings etc. And be completely consistent. (Easier said than done!)

Does your DS have sensory issues, over or under sensitive to smell, lights, sounds, tastes, movement? These can cause a lot of hard to understand anxiety.

The following all help anxiety:

vitamins - omega, zinc, magnesium

tinsley house

retained reflex therapy

sensory integration training

auditory integration training

gluten free diet

there is loads and loads and loads you can do yo help him.

As he is already in year 4 I'd strongly advise you to do 2 things before secondary transfer hits.

1/ Chase a reassessment on the NHS - there are related conditions such as auditory processing disorder and dyspraxia that can cause similar issues to higher functioning asd. Make sure this time they rule this out.

2/ If you can look into getting a private diagnosis. Sadly in some pcts there is a deliberate policy to delay diagnosis to preserve funding so it's not uncommon for kids to finally get a diagnosis in their teens. Course this is not publicly discussed with parents.

Is he statemented. Looking at the sencop guidelines do you think he should be? IF so & he isn't bust a gut NOW to get this in place before secondary transfer as any current issus will magnified 10 fold if he isn't properly supported in the much larger, more complex environment of secondary.

Agree with Indigos advice re the anxiety in terms of stuff you can do.

marymary - i was looking at the list and thinking that lots of those could be my DS (yr 4) - who doesn't have ASD - but dyspraxia and SPD. They are all on the spectrum, lots of symptoms are co-morbid.
You do need to plan for secondary school now. I don't know what your LA are like, but where we are, the time to get everything in place for a smooth transition to a suitable school takes a long time.
I have been keeping an eye on secondary schools - how many pupils they take that are statemented, their academic results for SEN etc. I've spoken to parents of children with SEN that go to different local schools, and have my plans as to which schools might be suitable and what i need to do to get my DS there.
In our LA, applications need to be in for non statemented children in less than 2 years - statements even earlier. With appointments times, and waiting times etc that time will quickly be eaten up.

As well as the above which I would support, I would also contact the
school nursing service? I have found them really helpful and they can make referrals as well.

Here there are several programmes not in the NHS aimed at helping children manage anxiety. My DS2 attended one run by MIND, it was a four week programme and it really helped. We got the referral through the school nurse, and he was on the programme within a couple of weeks.

Gosh, that is a lot to take in!!

I have never heard off half the stuff on here so i need to get reading, although I have read a bit of Tony Atwood and that is what pushed me and the school into looking into things last time.

It is clear I need to get my act together and sort out a plan, ideally for the start of the next school term, with a view to having something sorted before he goes up to secondary school. (if this is possible)

If I was to try and get a private diagnosis, what is the best way to go about this and any ideas of costs involved???

Thank you all for help, keep it coming in as simple terms as possible please.

ok following on from this, I have an appointment with the school senco tomorrow, they have also recommended that I make a GP appointment and get their support for taking this forward.

Two questions

1. Tips on what I should cover with the senco, to be honest I have had a result here, she is the old dep head who has come back after abscence and taught my ds in reception so has first hand experience of some of the history from then.

1. With regards to the gp, should I take ds with me or go on my own, I am not sure what ds would add, he would no doubt be a model child and just sit there making me out to be some kind of loon!

I have spoken to ds in vague terms with regards to why we may see some professionals again, extra help in place before secondary etc. I would be interested to know your experiences of sharing your concerns with your children, how you approaced it, how they reacted etc.

Many thanks lovely people

ps son has watched big bang theory with us and thought sheldon was really funny,,,penny penny penny penny, that sounds like me he said, mummy mummy mummy mummy!!!