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Here are some suggested organisations that offer expert advice on special needs.

Really need advice about private assessment of ds - so fed up with school

14 replies

shagmundfreud · 10/03/2012 21:01

Hoping someone can help me with advice. DS is 7 and has shown autistic markers since - oh way back, since nursery. My sister is an early years teacher and has always said that he's on the spectrum.

He's very obsessive. He's had a series of obsessions each one has persisted for months and sometimes years. The first one was keys. He just wanted to look at them, play with them, insert them in locks, talk about them, walk around with them in his pocket. Repetitive questions about keys. Then he started on fire alarms and signs. He couldn't walk past a sign without needing to stop and talk about it. Again - very repetitive questions. I had to carry him in a sling to nursery until he was nearly 4 because you just couldn't get him to walk or stay in a pushchair - he needed to stop and look at signs and talk about them the whole way there.

He's hypersensitive, becomes obsessed with tiny injuries or scratches, has very sensitive hearing, and becomes incredibly distressed by fire alarms at school, to the point that the teachers used to phone me and warn me if they knew they were going to have a fire drill that day, because he'd be so upset coming home.

At 7 he's very, very literal minded, can't be reasoned with, shouts, tics, often belches every 5 seconds for hours on end, and is very difficult to discipline. He fiddles obsessively with the family computers (changes all the settings and passwords), and the dog (he made her lactate he fiddled with her nipples so much!)

I initially raised my concerns about his unusual behaviour with his key worker at nursery and when he went into reception, but was brushed off. His teacher in reception was the SEN co-ordinator at the school. She just insisted that he was 'eccentric' and 'his own person' (which of course he is, but he's also got special needs!). Anyway, back the first week of year one and the same teacher calls mein and says to me that she wants to make an appointment for him to see the EP, and, her exact words: 'I'll eat my hat if he's not on the autistic spectrum'. Well - yes, we know!

Anyway, that was at the beginning of year 1. He's now half-way through year 2 and has seen the EP twice, but we've had no feedback, other than for her to have met with us at the beginning of the academic year and told us she thinks he has aspergers, and possibly ADHD. But nothing on paper. Nothing about his abilities or his learning needs, or what we or his class teacher can do to help him. And now she's gone off on long term sick leave and we've been left wondering what, if anything, will happen next. He's been referred to CAMHS, but I've been told it'll be months and months before we see anyone. The school seem to have nothing to say. I feel that because he's making some progress and is achieving in line with their expections (but not mine) they're happy to sit back and do nothing. Despite his difficult behaviour at home, and tics/impulsiveness, he's not violent or really difficult at school.

He needs more support than he's been getting at school, and we need support with parenting him. Our other children could do with help coping with his behaviour at home. I was speaking to a friend about this yesterday - she's a primary teacher, and she's strongly encouraged me to consider getting a private assessment done NOW to move things along, but we don't know where to start.

Who would do a private assessment? How much would it cost? Is it common for people to get a private assessment done and do schools take any notice of them?

Really grateful for input from anyone who's gone down this route!

OP posts:
shagmundfreud · 11/03/2012 07:05

anyone?

OP posts:
dev9aug · 11/03/2012 07:46

Hi there, lot of people have been through the private route to get a dx on this board including ourselves. Our DS was quite young compared to yours so I can't tell you about similar experiences, I am sure someone will be along shortly who has been there.

What I can tell you is that a private dx was helpful to us because it showed the health care professionals we were serious and they couldn't fob us off with excuses. so if you can afford it I would definitely go for it. The cost can vary depending on where in the country you are and who do you use.
We used a neuro Paed in London and she gave us a dx based on a case history and observations. The appointment lasted two hours. The cost was £720. Others have used educational psychologists as well to obtain a dx.

HTH, hang in there, I am sure others will be along with useful advice shortly. They always do..Smile

AttilaTheMeerkat · 11/03/2012 09:06

"Anyway, that was at the beginning of year 1. He's now half-way through year 2 and has seen the EP twice, but we've had no feedback, other than for her to have met with us at the beginning of the academic year and told us she thinks he has aspergers, and possibly ADHD. But nothing on paper. Nothing about his abilities or his learning needs, or what we or his class teacher can do to help him".

Unfortunately I am not surprised to read any of the above and your son has been and is being failed by the EP and his school. This current school are basically not interested in helping your son; besides which he will start juniors in September. Many children with additional special needs as well go unnoticed if the child is both quiet and compliant in class. Also such children can bottle up all the frustrations of the school day only to take it out on the nearest and dearest at home. That is an indication that their needs are school are not being met.

EP cannot officially diagnose anything like AS or ADHD so this person acted well outside their remit. An EP can only make recommendations re educational needs - did no-one ever mention the word statement to you?.

The other way to get a dx (and obtaining the dx itself can be a long and drawn out process too) is to ask your GP to refer your son to a developmental paediatrician. BTW CAMHS certainly have their place but there are families on here who have had both good and very poor experiences with them. Also you may find that ASD is not actually thier main area of expertise. GP may also be able to give you the names of private based developmental paeds. Another route here and it may help you all as a family too is to contact the NAS (the National Autistic Society).

If you subsequently name the county in which you reside, someone may be able to tell you of someone in that area.

With regards to school I would start applying now for a Statement of Special Needs from the LEA yourself and ignore any naysayers. IPSEA's website is good at the whole statementing issue www.ipsea.org.uk. Statements as well can take six months minimum to set up but if you manage to obtain this for him it may go onto make his life at Juniors a bit easier because the statement is legally binding (unlike any other school based plan he may be on).

The other thing to remember here is that you are his best - and only -advocate here. No-one else is better placed than you to fight his corner for him, this is because no-one else actually will.

oodlesofdoodles · 11/03/2012 09:29

Horrendous story. I'm sorry you've had to wait so long. Is your ds happy?

We went the gp - community pead - salt - neuro route and it took about a year.

Ds is at a small private school. (I don't know how long we can keep that up financially.) Any useful, practical, detailed advice we've had has been from private therapists.

beautifulgirls · 11/03/2012 09:41

Second Atilla - look at IPSEA and getting the statementing process started with him.
Re private assessment for ASD, I don't know if SOS:SEN can help point you in the right direction? I used them to locate a private Ed Psych, so they may have list of other professionals in your area you could contact.

Ineedalife · 11/03/2012 09:44

I did post earlier but the stupid phone lost my post.

Dd3 was dx'ed at camhs, they were very good and are currently doing most of the ASD assessments in my area for older children due to a lack of developmental paeds.

They discharged her straight after though because ASD is not a mental health issueHmm.

If you cant afford to go private you could try ringing camhs and asking if you could get a cancellation appointment, if you are able to go at short notice. Also if they havent sent you an appointment ring them every week until they do.

Good luckSmile

cozzie · 11/03/2012 11:09

DS1 was dxed by a private neurodevelopmental paediatrician like dev9aug and it made the school and other health professionals sit up and listen.

If you can afford it, I would go for it as the waiting lists for us locally were insanely long.

She was also able to recommend an Ed. Psych so that is our next step! DS has some attention issues too.

Oblomov · 12/03/2012 05:08

I agree with ringing CAMHS, weekly.
We got our GP to refer to Paed. He was apparently the best and highly recommended. But the wait was long, on the NHS. So I paid £200 to see him privately, for an hour. Could you do this ? This got the ball rolling. He refered us to his clinical pyschologist. She sent a report to the school, but the school ignored it, because it was a private, not an NHS report.I told him I couldn't see him privatly again, but what it did do, was 'have us in his mind' and funnily enough, very soon afterwards our NHS appointment arrived. eventually he got us into Camhs, and we got our NHS diagnosis.
It seems to me, that many schools take no notice of private reports, and only take notice of NHS ones. Shocking !!

magso · 12/03/2012 10:21

What a private report (EP not paed) did for us was help us understand and fight for ds needs. It gave me the confidence to stand up for ds when the lea tried to bamboosly me. The lea ignored it for the statement.

wasuup3000 · 12/03/2012 10:28

We saw the CAMHs Dr privately and he reffered us to his NHS clinic.

peekabooby · 12/03/2012 10:37

If he isn't currently being seen by a paed I would ask for a referral. We were also waiting for CAMHS assessment with a long waiting list.

We went private and got a dx of HFA with some ADHD traits by a clinical psychiatrist, incidentally within a month we were given an NHS dx by the paed of Aspergers. ds had been assessed by Physio for gross motors skill delay, OT for Sensory, SALT and EP.

Due to the length of the waiting list for CAMHS and the fact that all the proffs were in agreement he has been dx without ADOS.

Does your ds have any sensory, fine or gross motor skill problems? if he does ask for referral.

shagmundfreud · 12/03/2012 17:44

Thankyou for your responses everyone. Lots to think about.

Not sure that we can run to the cost of a private consultation with a paediatric specialist. But don't want to just wait for CAMHS to come through, given that it could be months, and he's starting Juniors in September.

Thinking I might try to get an appointment with the very good GP at my practice (saw someone else last time) and see if I can get a referral to a developmental paediatrician.

As far as sensory issues go - I'm really not sure. He's very sensitive to noise (hence problem with bells and fire alarms at school) and gets very fixated if he has an injury, even a small one. He tics a lot when he's over stimulated - especially after school. The whole walk home he's grimacing, screaming, shouting, belching. He'll stop if you ask him a question he is willing to answer, but then he starts again.

I can't quite get to the bottom of why he's so normal sometimes and why he's so obviously autistic at other times. When he's one to one he's actually generally really nice to be with, and you see very little of the odd behaviours. But when the whole family is together or (god forbid) we have other children in the house, he can be impossible. On the train the other day he was yelping, grimacing and frenetically kicking the seat - kept it up for a whole 30 minute journey. But then on Saturday night we went to pizza express and he was brilliant. Sat quietly, ate his food, coloured a picture.

I worry that I spoil him too. I get so cross with my other two d/c's for winding him up, and I can't look at him without the overwhelming feelings I have for him showing in my face. My other children see it and resent it - feel that he's treated differently, which he is. I just think he's so wonderful and special, even though he's infuriating and exhausting.

Hard this parenting business isn't it? Smile

OP posts:
flowwithit · 12/03/2012 18:11

Well I wish we had gone private the first time. We saw CAMHS at age 7 and were told not enought evidence for dx even though Ds ticked most boxes! He has since started secondary and had terrible anxiety so we went private and got dx HFA or AS. This would have helped Ds at primary as there were many probs and difficulties. Good luck hope you get the help you need.

peekabooby · 12/03/2012 23:05

@shagmund Are you me? Grin

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