what if son is assessed and not autistic? please help im desperate

[mrshess]

Hi we have had problems with my son from an early age the main ones constant waking up at night and refusing to go to sleep and behavioural trouble like tantrums and not being able to take him anywhere as he will run off.
He doesnt like other children and acts inappropiately in front of strangers like shouting strange words at the top of his voice.
These are just a few things he does and we have been pushing for answers especially as we have had no sleep for 3 years and there is something wrong at night.
We are made to feel like he is just a normal boy and its just his behaviour and we have asked for help from gps/hv/sure start centres and finally social services and she did a CAF and asked me what help i wanted from them. I dont know what help is on offer and i asked about being assessed for autism and she said if thats the route you want to go down (sort of implying not the route she wanted to go down).
I said if he isnt autistic then at least we will know its behaviour and we can be a lot stricter but she sort of implied we wouldnt get any help for behaviour.
We have seen various paeditricaians who have both said he has autistic traits but we are going round in circles. My question is if he isnt autistic are we then on our own in getting him to try and sleep?
Do they have an obligation to help us?
What other help could we get?

Get back onto the community paeditrician and formally request an assessment for autistic spectrum disorders. Ask you health visitor if there is a local sleep clinic and parenting classes. Even if the problem doesnt go away at least you will have met others oin the same boat. Have a look at NAS early bird scheme. I think with regard to help it is often those who shout loudest and have the most knowledge get the most help!

Mrshess you wrote :"i asked about being assessed for autism and she said if thats the route you want to go down (sort of implying not the route she wanted to go down)." in my opinion that may not mean SW doesn't think (although SW aren't there to dx) that your DS isn't autistic, there are a lot of professionals around who don't like to 'lable' children, so they'll speak of 'autistic traits' but won't admit it's autism. It's ludicrous!! and drags out the dx procedure for a considerable amount of time.

Absolutely you have the right to go back to the paed, and ask for a full autistic assessment. Follow your gut instinct if something doesn't feel right in your opinion then you're probably right. Go for it. Good luck.

i would agree with mebaasmum - after five years of involvement with professional services I would say that it is only after shouting, regular pestering phone calls, doggedness and at one stage threatening legal action that we got what we needed. If you make your request for assessment in writing they need to respond to you in kind as it then becomes more formal. Good luck.

I fought for 2 years to get a dx.
school said ds was just naughty, gp said ds was lively and pead reckoned ds was adhd.
He went for an initial assessment with CAHMS who said he wasnt ADHD or ASD and that it was a parenting and non bonding issue.
I fought on and got him assessed via ADI-r and ADOS test and he finally got diagnosed with ODD and ASD

keep fighting. I was told by the pead who finally diagnosed DS that the reason his ASD wasnt seen without proper testing was that DS had learnt to hide many visable signs of his autism, he couldnt however hide these signs for the 2 hours ever week for 6 weeks that he was assessed using the ADI-r and ADOS!

Thank you all for your replies, im just weary and questioning myself and upset that im being made to feel that i want something to be wrong with my son.
Our biggest problem is 1st paeditrican wanted him assessed but we moved area and second one (in new area) said he had autistic traits but didnt think it would be beneficial to have him tested at this stage and made a review appt in 6mths despite me breaking down and crying saying we couldnt go on with the sleep issue.

The right diagnosis can help others understand and guide teachers and everyone else. My son has ASD and the diagnosis really helped me understand him and why he has certain behaviours and therefore understand his needs. Some behaviours I cannot change (at least not yet) - but understanding them helps me to manage them often by working around difficulties.
Ds was first suspected of ASD as a toddler but not diagnosed till age 7 after years of 'GDD with traits'. If I could go back to his toddler days ( knowing what I know now) I would be far more insistant that ds could and should be assessed. Good luck.

I have been fighting to get my ds diagnosed since he was 4 he is 16 this year and school,school Dr and ed psychologist all say he is autistic getting him reassessed once he goes over to adult team in the summer.

Things you could do in the meantime:

Think about melatonin to help him sleep. Kids with these problems are terrible sleepers but need sleep even more than other children.

Take a look at his diet. Could you do a trial of removing certain things to see if it helps? Sugar, dyes, dairy, gluten, etc.

Consider listening therapy. This might have an effect on the loud talking.

Are there certain types of stimuli that he is reacting to sensory-wise? Sensory integration techniques are helpful here.

Have you read any books such as The Highly Sensitive Child, Raising Your Spirited Child, The Out-of-Sync Child, Sensational Kids?

I really appreciate everyones ideas and input so thanks

Jabberwocky what is listening therapy?
We have tried melatonin and although it got him to sleep it didnt keep him asleep.

There are a few different programs of Listening Therapy This website explains it well and there are some MNers who have used it with their dcs. If your son is tactile defensive the REI program is open air so he wouldn't have to use headphones. I'm going to try this one soon with ds1. He really hated wearing headphones!

Just a thought but Cerebra is an organisation for all disabilites and differences caused by neurological differences or damage (apologise if I have phrased that badly). They have a sleep nurse/councellor available via phone. I guess you probably have to be a member but it might be worth a try.
I do not know how old your child is.

What is ADI-r and ADOS test?