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DS possibly on autistic spectrum, struggling advice needed

(11 Posts)
Boogiemumma Tue 23-Aug-11 21:55:28

Hi
My DS is 6yrs old and for some time has been displaying what may be ASD tendancies, he is currently under a paediatrician but no diagnosis has been made. He is a bright lovely child, bright, loving, creative, but has a number of issues: a problem with aggression, violent outbursts, hitting kicking etc, losing control completely, quite poor concentrtion, inability to keep still, poor coordination problems listening, difficulties with social interactions and communication i.e. inappropriate noises and shouting or he will come out with random sentences that have meaning only to him and get cross because people don't understand what he is referring to, he has few friends and can come accross as quite self centred as play has to be on his terms, he also gets quite fixated on issues which can be positive i.e learning about the titanic or negative - collars touching his neck. His behaviours have up til recently been evident mainly at home however he has started to display more negative behaviours at school. As I mentioned he has seen a paediatrician however, she wants to review in 6 months as she thinks that there is not strong enough evidence yet to point to a diagnosis of ASD or ADHD. To be honest I am really struggling I feel that as his mum I really notice the differences between him and other kids his age and as he gets older it's become more apparent. I feel really down and at a loss as to what to do, I am desperate to help him, I try really hard to manage his behaviour and help him behave in a more socially acceptable way as it gets him down too. I don't know where to turn for support. I personally think he is on the autistic spectrum and don't want to wait for a formal diagnosis I'd rather see what else I can do that I'm not to help him. I feel upset and that somehow his behaviour is my fault and that as his mum I should be able to fix it. I also feel ashamed because I feel embarrased by his behaviour and sometimes i.e when school tell me he's been awful or when he has hurt another child, I am ashamed.
Sorry for the rant I just don't know where to turn :'(

StarlightMcKenzie Tue 23-Aug-11 22:00:21

What evidence is the paed looking for? Ask him/her. Ask what needs to be different in 6 months time that will warrent a diagnosis. Look up the paed on the medical council register and see if he/she has any background in ASD/ADHD.

Ask the school what they are doing about his behaviour. What support is in place, and how they are monitoring its effectiveness.

Do both of these things in writing. Then if you can possibly afford it, and deal with the sense of injustice this brings, get a private dx, or at least a private investigation.

StarlightMcKenzie Tue 23-Aug-11 22:01:33

Oh, and sorry to launch in.

Am so sorry that this is happening. This is the worst part. When it is all unknown and you just don't know where to turn or what to do. But you will, and things will get better. But you need to be prepared to do most of it yourself.

cansu Tue 23-Aug-11 22:15:14

I have two dc with ASD and I know where you are coming from. Star is right that you will have to push things forward as professionals will take their time. However, you need to be kind to yourself. I spent the first few months of ds diagnosis journey having panic attacks and at my wits end. I also do still feel bad when dd2 has bitten / pinched someone at school. I know that it is not my fault and that I am doing a good job, but you might need to develop a thick skin. I think that other mums and school will take their cue from how you deal with it. I am very upfront about dd2's difficulties at her mainstream school and always put the focus onto her condition, this helps us all to look for solutions as to how she might be helped rather than blamed for her behaviour. If you feel that paediatrician should assess him now then push for it. I sat back with ds1 because I quite honestly couldn't face it, but with dd2 actually asked paed to do the diagnosis asap so I could focus on the help she was going to need.

mariamagdalena Tue 23-Aug-11 22:28:38

I did an ADHD/asd focussed parenting course while we were waiting for diagnosis (ds has both). it was fantastically useful in giving me ideas, confirming that I was doing loads right already, and in ticking the box of 'done parenting course'. I would strongly recommend you try to a get something like that under your belt during the six month wait till your next. Appointment. If you call the paediatrician's secretary, he/she can probably give your details to the right people, which varies from area to area.

coff33pot Tue 23-Aug-11 22:38:02

I would reiterate what star said about finding out what the school are going to put into place if his behaviours are upsetting his applecart there.

And go back to Pead failing that go to camhs and have him assessed that way. You can do this via your GP.

Depending on school response you can apply for a statement yourself to the LA if they wont do one for you that can assure he gets help within school.

Make a diary of happenings at home and at school. Ask school for a home/school book so you can be up to date what is happening and it is a good record to show proffessionals during his assessments.

Be positive and be kind to yourself. This is not your fault. smile

IndigoBell Wed 24-Aug-11 09:36:49

Boggie - I disagree with some of the comments above grin

I think you're right not to worry about the dx - but instead assume he has ASD and start researching it all you can. The paed needs to see your boy twice, 6 months apart so he can confirm the behaviour is persistent and long term. It would be irresponsible of him to give a dx after only seeing him once.

As for researching it - you're in the right place. MN SN is the most helpful place in the whole world. Read old threads and you'll pick up heaps of ideas.

Do you have a local ASD support group? There are many, many of them all across the country. Def worth going to if you can find one.

As for what you should do, on here we're taking many different tactics.

Some people are doing behaviour modification stuff very successfully and highly recommend it (eg ABA)

Some of us (like me) are doing therapies to improve underlying physical problems ( eg AIT, Retained Reflex Therapy)

Some of us are taking supplements ( eg Omega Fish Oil, Epsom Salts, Behaviour Balance)

Some of us have made dietry changes (eg GF/CF, GAPS)

Some of us have got private specialists involved (eg SALT, OT)

So there is a huge amount of things you can do. The hard part is deciding what to do first.......

Then you also need to start talking to school. He should be on School Action and have an IEP (Individual Education Plan). You should have IEP review meetings every term with his class teacher and SENCO........

StarlightMcKenzie Wed 24-Aug-11 09:49:06

Indigo, surely at age 6, the paed can simply ask if he was like it at 5?

The majority of the diagnosis via ADOS and ADI is based on parental questionnaires as children with ASD can present quite variably at assessments and they aren't considered particularly accurate.

IndigoBell Wed 24-Aug-11 09:52:48

Starlight - no I don't think so. I think they have to have professionals witness it twice 6 months apart at that age.

Our dx (aged 8) wasn't done via ADOS or ADI. The paed saw him twice, 6 months apart, and during those 6 months he was assessed by the EP and the OT. The EP report was full of 'displays behaviour consistent with ASD' - and I think that was the report that carried the most weight.

We didn't fill in any parental questionnaires at all. School did one - but not very well.

Boogiemumma Wed 24-Aug-11 21:37:02

Thanks ladies it has given me some food for thought and i'll certainly look to see how others have managed on here. It's a tough time - mostly in the fact that I have so much to learn! Have any of you seen much improvement after using any strategies or support that you've used?

IndigoBell Wed 24-Aug-11 21:59:39

Why don't you start with this thread: Top 3 treatments

But yes, between the lot of us we've seen lots of inspiring and unbelievable improvements.

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