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Going round and round in circles to get ASD diagnosis.

(20 Posts)
SmiteYouWithThunderbolts Sat 16-Feb-13 09:33:10

Hi all, this is my first post in here and I'm hoping for some advice/information/hand holding.

My ds2 is 6 years old and in Yr2 at school. Throughout Yr1 he really struggled to keep up with the work and his teacher was utterly useless, just wrote him off and stopped trying with him. When time came to move up to Yr2, he was placed into a smaller class for children with varying degrees of SEN and he has absolutely thrived. His teacher is one of the SENCO and she 'gets' him and how to get him to focus. He's been on a School Action+ programme all year and it's worked really well for him.

At home, he's always been a delight if a little scatterbrained, forgetful, clumsy and generally a bit away with the fairies. It's just always been his way and we didn't think much of it beyond remembering to be patient when it comes to him getting his shoes on the right feet, making it along the school run without falling over repeatedly - you get the idea!

At our first parents' evening a couple of months ago, I had a great chat with the teacher about some of his ways and she filled me in about stuff he does in school and between the two of us there appear to be a lot of flags for ASD behaviour (the teacher also mentioned dyspraxia). The more I read about it, the more I'm kicking myself for not seeing it in him before, particularly as his nursery school referred him to a SALT when he was 3 and mentioned ASD then. I shot them down and thought they were being over zealous. blush

Anyway, since the parents' evening I've been passed from pillar to post about getting the ball rolling for assessment. The teacher said they were collating a portfolio of evidence to pass on to the head of the SEN department but that I could go to my GP for a referral to the Ed.Psych., which I did yesterday. The GP, however, rolled his eyes and said that referrals have to come from the school and all he could do was give me the phone number for CAMHS, but they probably wouldn't help until ds has been assessed. Very helpful! I went back to the school with this information and they said they can't do referrals, it needs to go through the GP!

All parties seem to agree that there's enough evidence to warrant assessment for ASD, but nobody seems to actually want to get things going. Is there anything I can do to help? I tried ringing the Ed. Psych. but was told they only do assessments for pre-schoolers and ds would need to be seen by the community paediatrician instead, so I called them and they echoed what the school said about the GP needing to refer us. I am banging my head against the wall!

Thank you very much if you've managed to read all this. I would be extremely grateful for any information and advice.

Ineedmorepatience Sat 16-Feb-13 09:42:30

Firstly, dont beat yourself up, some children with Asd are complex and can slip through the net and you are on to it now so if he needs a dx he will get one.

Your Gp is talking crap about camhs, he needs to refer your ds they wont accept parental referrals. The school probably do need to get ed psych in though.

You could go back to the Gp and ask for a referral to camhs or a developmental paediatrician. Also while you are there get a referal to OT (in the next LA to me the waiting list is nearly a year long).

I would also recommend getting him checked for hypermobility, Dd3 is hypermobile in all her joints and used to fall all the time, she now has orthotics in her shoes and has had some physio. She falls a lot less now but is still very clumsy.

Good lucksmile

PolterGoose Sat 16-Feb-13 09:48:23

Message withdrawn at poster's request.

SmiteYouWithThunderbolts Sat 16-Feb-13 10:02:32

Thanks, that's really helpful. Will book another appointment with the GP and push for referral to a developmental paediatrician.

Will CAMHS help at all? The GP did say he'd send a letter to them as well (not sure what he thought that would achieve!).

Ineedmorepatience Sat 16-Feb-13 10:12:32

In some areas camhs do some of the assessments and psychiatrists can diagnoses Asd. However, Asd is not a mental health issues and they may not necessarily have the right expertise.

They will still most likely want reports from other proffs such as SALT and OT.

My Dd3 was diagnosed by camhs but then imediately discharged as she doesnt have MH issues. Where as I know many Dc's who have been dx'ed by paeds who get follow up appointments. I dont suppose it matters really, if you need support after dx you could always ask for a rereferral.

Good lucksmile

Handywoman Sat 16-Feb-13 10:13:35

I'm not sure why school can't refer? My dd2's school referred to community Paed via school nurse, they used a single service request form. I think it would be better to get school to refer since they are providing him with an education, evidence for assessment and ongoing support in relation to this diagnosis.

However if they say they can't then I would go to GP and refuse to leave without a referral.

Schmedz Sat 16-Feb-13 10:27:53

I feel your pain! Four years down the line I am still trying to get a proper 'official' diagnosis ( a few years ago we went private and my daughter was properly assessed as having Asperger Syndrome but apparently we can't access any service without an NHS diagnosis. we could also not afford the £100 per hour consultation fees. we are left without a proper report and ongoing support from this particular psychologist, but i suppose that is another matter!)

At least your school seems to be more on the ball than our daughter's was...all the concerns about her we raised and the GPs are next to useless in the area of ASD (mine told me that the twitches, hyper mobility, unbelievable memory skills, big social problems and advanced language were just because she was 'precocious' and all but refused to refer her until I insisted!)
I was also told the school could refer to CAHMS but they similarly said it had to be a GP.

Hang in there and just continue to be assertive about the next steps your child needs. You have a lot more evidence for assessment than we did at your stage of the process and it is the right thing to do. It is a crying shame that parents need to literally fight to get their own children the help they need, especially given the huge amounts of NHS contributions made through our salaries!!

Ineedmorepatience Sat 16-Feb-13 10:50:16

Hi schmedz sorry you are having such a battle. It took 3.5 yrs to get Dd3 a diagnosis.

So many proffs are still not getting the fact that girls with Asd present differently to boys.

Just out of interest have you ever kept a diary of her issues? I found that the proffs did take note of my diary and when I took it to the paed it was the first time that I felt I had been taken seriously.

Good luck smile

Sorry for the hi jack smite

Samu2 Sat 16-Feb-13 11:28:40

I am going through the exact same thing right now with my 11 year old son.

He had the screening test and scored 20 out of 40 which means nothing to me and the doctor was so crap he just said he would refer him to the ASD clinic, so I guess we are getting somewhere at last, but getting here has NOT been easy and there are also mental health issues he needs screening for now as well.

It's such a long process and I want to bang my head against the wall.

Plus3 Sat 16-Feb-13 12:19:16

Hello - go back to your GP and ask for a referral to a developmental paediatrician.

I did this in yr2 after school suggested DS had sensory processing disorder in yr1 (& was strongly advised to find a private OT as waiting times huge) the OT helped but it was obvious that sensory issues were not the only problem.

DS is in yr4 now & is being described as 'complex' - this whole process takes soooo long & you have to just keep pushing. We have no diagnosis but it seems like a process of elimination.

Good luck

SmiteYouWithThunderbolts Sat 16-Feb-13 12:29:43

Is OT short for Occupational Therapy? I'll look into that too. Gosh, it's quite overwhelming!

Thank you all so much for the help. Schmedz I hope you get somewhere soon too.

Plus3 Sat 16-Feb-13 16:26:32

Yes - sorry!

isthatallyouvegot Sat 16-Feb-13 17:49:29

Yes I am quite sure that schools can refer to community peadiatrician, occupational therapist, speech and language therapist, and unless I mis-heard my Ds's neurologist when he was talking me through the next steps I'm pretty sure he mentioned the school's GP hmm. I will have a scout around about that.

isthatallyouvegot Sat 16-Feb-13 17:58:01

Please note for the school to get an EP in it will cost the school your Dc school work suffering at all?

AttilaTheMeerkat Sat 16-Feb-13 18:25:28

GP should be referring your DS to a developmental paediatrician; they can do this. If this GP continues to be unhelpful change GP practice. In some areas CAMHS do diagnose instead of the paediatrician but ASD is not always their area of expertise or speciality.

EP can only make recommendations re educational needs and cannot formally diagnose; has anyone mentioned the word statement to you?.

SmiteYouWithThunderbolts Sat 16-Feb-13 21:46:46

Attila - I've picked up bits about statements from hovering around MN but I don't fully understand how to get one in place. I do have another thread asking about getting a statement before having a formal diagnosis and have been given some helpful info there.

isthatallyouvegot - his school work has picked up lots this year since he's been in the SEN class, but last year in the MS class he really struggled and was far below average. I'm very worried that without the support he has currently when he goes into year 3, he will fall behind again (the school only appear to have this type of class he's in now for one year so I have no idea what their intentions are for all these kids at the end of this academic year!).

Ani123 Wed 20-Feb-13 10:06:43

if you want an independent assessment and the school or local education are not happy doing it - it costs money and they dont have a lot of it. go to patoss website there are qualified specialist teachers who may be able to do an assessment for you.
Good luck

SmiteYouWithThunderbolts Tue 05-Mar-13 09:41:05


We finally have our referral! The school nurse came out last night to chat with DS and take a history from me, and between that and the reports from school she said he is "the dictionary definition of dyspraxia" and also shows some definite autistic traits too, although he also exhibits some behaviours which are decidedly not autistic so she's on the fence about that side of things. She's referring him for assessment for dyspraxia and said that the assessments for that and ASD are done by the same team, so if there is enough there to also get a diagnosis for ASD, that will come out at the same time.

I am thrilled that we're finally getting somewhere and very relieved that she wasn't at all dismissive. I had been panicking after meeting with one of the SENCO at the school and her insisting that his funny ways are just down to immaturity hmm.

StarlightMcKenzie Tue 05-Mar-13 13:21:23

Excellent. Now follow up that in writing to the person who made the promises with a question at the end of an expected timeframe. smile

Handywoman Tue 05-Mar-13 14:22:51

Great news, Smite xxxx

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