6yr old has been assessed - Please help

Hi mummy4

Sorry I've not been in touch. Life is hectic. The situation with your son sounds very frustrating. I wonder how knowledgeable the school nurse ichat out children on the spectrum. I know he's got an ADOS report in September but in the meantime they should offer you some more support. 

Is there any support groups where you live? Sometimes children's centres run groups for children with special needs. Because the children behave in a similar way they feel more comfortable to behave like they do & the patents understand too as they're in the same boat. 

Keep in touch as I've thought a lot about you & your situation. We aren't through everything with our son yet but I fully understand how frustrating it cn be.

Have a great weekend.

Take care. Xxxx

Is it usual for such assessments to take place at school without the parent being informed at the time?

I've now had the report from the consultant nurse who observed my son in school, whilst i'm pleased the she witnessed my son socialising with peers, she stated overall that she wasnt overly concerned but would send him for an ADOS assessment.

My concern is that the report had no mention of his tip toe walking, it did mention things like him rubbing his head up and down the teachers leg at carpet time and rubbing his hands up and down his jumper, she also highlighted that the teacher had to keep him on task with additional instructions especially when it was group requests that he didnt respond until spoken too, she stated that it could be sensory mannerisims or immature social behaviour, all of the things she did notice arent a surprise to me but slightly surprised that she wasnt concerned

not sure if the ados assessment has been requested because she does have concerns or its more of a tick box given the paed was concerned and referred him?

thanks x

Hi All

I took your advice and spent the morning locating the right department, i've spoken to the community nurses secretary, who was nice, the reports being written up but i probably wont get a copy as they dont send them out if theres not much to say but she then told me my sons on a list for an appointment at the end of sept for an ADOS assessment where i can ask questions and voice my concerns. She said they would be no further appointments needed

My question is does this test assess sensory issues or help him with tip toe walking etc?

It looks like its more of an assessment for autism does this include aspergers or is it different? with no other appointments needed, is this being done just to tick the boxes as they dont think he requires any support, however i do take on board crystal what you have said re funding and money so maybe they wouldnt just do an assessment if they didnt think any was required?

She did try to reassure me but i'm still not clear on what they are assessing on, maybe i'm not understanding the whole process

Thanks again

Hi again - it can be worth keeping a daily diary of your child when he's at home, esp if you don't trust the school to be honest about him whilst he's there.  Also video,so you can show professionals.  The school is being stupendously unhelpful, either because they're ignorant about autism or they're worried about it impacting on their budget, or both.  Sorry, I know I keep saying this in posts, but a lot of it comes down to money.  Don't let them "play you".  I hope things turn out as you want.

Thank you leesy lou and crystal12 for both taking time to respond, I sometimes feel like i'm going mad or a bad parent for pushing for a diagnosis, its actually the last thing we want and would love for a professional to say everything is ok but not when they dont know all the facts or havent spent anytime with my son.

I will google CAMHS, would it make it akward with the professionals/community nurse if i go down this route, the school nurse was initially extremely rude as I had made the call myself and it hadnt come through the school, the school actually asked me why he walked on his tip toes and had i tried telling him to stop because it was a bad habit!!

When i told the head teacher the pead was concerned and was referring him she told me that 'you dont want to get involved with all that, he doesnt need extra support he'll stand out' which obviously upset me, because i dont want him to stand out but i also dont want him to continue to struggle, luckily he's bright so for now he's keeping up with school work academically

I'm hoping the report comes through soon so i can see what they've actually assessed him on, as a few hours at home with him would paint a different picture ( he's currently got his silly head on as my brother in law has just visited, which sets him off if that makes sense)

Thanks again, i will follow up on the above advise, much appreciated

x

Hi - what a let down.  I don't know whether it's to do with budget cuts or just lack of appropriate staff within services or both, but this is definitely a substandard respond.  Most professionals who know about autism can diagnose very quickly, but there are procedures they usually have to go through before they can officially say.  In the late 1980s my son was diagnosed.  He saw a paediatrian 3 or 4 times in the 9 months it took to diagnose him, he also saw a psychologist + 1 or 2 other professionals.  Maybe the nurse doesn't understand autism well enough to give the diagnosis or maybe she's been told to identify sensory issues but go no further?  Sorry but you can get very suspicious about this sort of thing.  Money usually plays a big part.   Sometimes families have to "jump through hoops" to get an assessment/diagnosis + that should not be the case.  Contact CAMHS to see how they can help. If you feel like it write to the Chief Executive and Chair of the NHS Trust who employs the Paediatrician + detail your complaints.  Also the the Dir + Chair of the Children + Families Dept of your local council.  Councils also have Chairs of Overview + Scrutiny Boards so write a letter to the Chair of that also.  I know it's more work but they rely on us shutting up, trying to keep calm + above all, carrying on.  Good luck with everything

Have you heard of CAMHS - they are a group of specialists who deal with child & adolescent mental health issues. They have occupational therapists, physiologists, psychiatrists, & loads of other really helpful people who might be able to help you & your son.

You can do self referrals to them. Perhaps google them or ask your GP.The process for answers can take a long time but they are very supportive once youarea in the system. 

Hope you get sorted. 

Take care