I can't get a 'Diagnosis' of Aspergers

[Oblomov]

Private pyschologist said that when the ASDS questionnaire, "he did not even the criteria for borderline AS".

But she said his Theory of Mind tests by the other Dr and her tests, and our recollections of events, had shown Empathy was a real problem. Plus she lists : 'adult language', not wanting to please parents, poor peer friendships, echoing of teacher often in sarky voice, with sarky comments. I could go on.

But I am left with no diagnosis. But people say AS is Spikey. They say you can't have a diagnosis of 'Aspergers tendancies ' ( see, I have researched all the old MN threads !!)

she says he needs to "be treated as an 'AS child".

But where does that leave me ? As good as useless, or so it feels.

[milou2]

Judge the school by how the staff are responding to your family right now. That is all that matters.

Good luck with visiting other schools if you choose to do this. I had a very therapeutic visit to a nearby school head after deregistering ds2 nearly 3 years ago. He was kind, understanding and honest. I had no idea teachers could be like this.

[mariagoretti]

Sod their league tables, their ofsted,their heavily oversubscribed and highly sought after places. If this is how they treat worried parents and a needy child, how can you entrust your next dc to them?

No wonder the behaviour policy isn't working on your ds, and the other children are still teasing. The HT and the staff are hardly modelling the empathy and social concern you'd want ds to learn.

[Oblomov]

Have spoken to the CAHMS lady . told her thngs have got worse.
I told Tier 3 aswell, but they say they still have nothing till Jan. I am already on cancelation appointment list.
Nothing.

I can bear to think of changing schools yet. But I guess I will have to. We worked so hard to get ds1 in. Fera for ds2's place now. So sought after.

I will take him to GP. what she can do is probably pathetic though.

Dh says we will achieve nothing at 5pm appointment with Head tomorrow.
I have already prinnted off behavior policy, SEN policy.

But they won't budge. You can tell by their approaches already. I already told deputy and e-mailed senco about his not being born thing. Response. Ice cold.

I will ring child pysch and Paed and say, politely, this is not just good enough. what am i paying for here ???

[Tiggles]

Just echoing other posters, my DS (now 8) was dx 'school anxiety leading to AS type symptoms' when he was 6 paed said to treat as if AS.
School he was in was meant to be a good school. Terrible for him. They kept telling me he was fine, def not autistic, no odd behaviour. When paed went into school to assess him (school kept putting visit off) paed said 'loads of really odd behaviour' teacher said 'if only they had come in even a week before they would have seen odd behaviour he was fine when paed was here'.

We moved areas, and after period of home-edding to get DS over trauma of previous school, put him into a new school. When looking around the first school we went to had excellent OFSTED, fab new building, all singing all dancing equipment. I said to HT, DS has anxiety what can you do for him. He said 'looks fine to me, but if he has problems tbh I would find a more caring school for him' . Second school, not as good OFTSED, I said the same, HT was fine with it, said they had lots of experience with ASD, found out DSs special interest and showed him all the books about it in the library etc etc. Funnily enough DS went to second school and is getting on really well - teacher happy to coax him out from under table when something new happening etc. He was still anxious after 6months of being there so went back to CAMHS (as requested by previous paed before we moved) and he was immediately sent to the autism service, apparently really obvious AS and had dx within couple of months of starting seeing them! I wonder what there assessment of DS would have been if they had seen him when he was at his old school as ALL his symptoms were a million times worse then as he was soooo stressed all the time.

[TheArsenicCupCake]

I really think this, at this moment, is damage limitation.
good your on the camhs list, you can either go to the gp and get him to bump it up.. Or on your appointment letter will be the number and a name .. Call them.. Tell gp and camhs that the situation has changed fir the worse, you are very concerned about the emotional state of ds and considering what he's telling you he needs help right now.

Tell school that your ds is not in a health emotional state, teasing is a big contributing factor and they must deal with it as part of their duty of care to him.. That you are keeping a log of all incidents to help them to stamp it out.. And what else can they suggest as the situation is completely intollerable for your ds as it stands right now.
Ask for a copy of their bullying policy, behaviour policies, sen policy and grievence procedure.
Then call parent partnership.. And the LEA, The school are not meeting your ds's needs , his emotional state is suffering because of it. That the school refuse to meet his needs due to not having a dx... Rather than on a need basis.

The best schools aren't always the best for our dc's .. So pop and see a few and have a chat with the sencos and heads.

[bumblingbovine]

Also if you move him. Be honest with the school up front about his difficulties. Speak to the SENCO straight away and offer to provide copies of private reports etc.

I would be tempted in the first few days to give them parts of the reports that show your ds's diffculties more. You can always provide the full report later.

The important thing is to have the school understand from DAY 1 that your son needs to have help and support. It is often difficult to change the view a school has of a child once that view is entrenched.

Make sure the view they start off with is the view you want them to have. That he is great at ....., strengths are ...... but tht he has difficulties in.... (you fill in )

My sister who works in SEN says that in her experience the children who do best have parents who despite seeing the difficulties their children have, still see their children in a positive light and who are strong advocates for them while still working as co-operatively as possible with the school. Obvious when you think about it but it is easy to forget this when your child's behaviour is difficult to manage and not always an easy balance to strike but you have to try.

[bumblingbovine]

Oblomov - Many "good schools" are not good for children with SEN. Just because this is a good school does not make it a good school for your son.

[IndigoBell]

It is definately not the best school for your son.

Ring the LEA up tomorrow. Find out what schools have places in his year. Ring up and visit all the schools that you could commute to.

Then move him. The whole thing can be done in a couple of days. You don't need to give any 'notice' or anything (assuming you're at a state school?)

You can start your child their the next day if they have a place available.

[bumblingbovine]

I thinks that you need to take the psych's advice and TREAT HIM AS IF HE HAS AS. I am not saying you should give up on getting a clearer diagnosis but the school needs to take this on board and treat him as if he has SEN. If they won't then your son really does need another school.

Is it possible to look at your local schools again and talk to them all? See what their policy if SEN is and see if another school will take what you and the psych says seriously. It sounds to me like the school your ds is at is not helping at all.

Before you do this though you might consider writing to the Governor of the school with responsibility for SEN. It might not help but it might just do so.

[Oblomov]

School suposed to be one of the best in County.
I always thought it was.
Maybe it is for a NT child. Not SN ?

[IndigoBell]

Can you not move school?

Even with a dx I suspect this school won't be a caring place for him....

[Oblomov]

I will take him GP.
Doesn't help in the meantime.
He is still losing minutes and being teased.

[Oblomov]

I have a tier 3 cahms appoint in Jan.
My paed is supposed to be the best. Many people have told me so. he is specialised in Sn's and his colleague s the ADHD soecialist.
I learnt from daisysue, earlier on this thread, that Paed on daug, if it is very veyr easy and clearcut and blindingly obvious to any layman.

I feel like no one is helping me. but maybe no one can. if he doesn't tick enough of the boxes, what can you do ?

[SausageMonster]

Obo

You're legally entitled to a 2nd opinion. This Paed sounds useless.

ask GP for referral to Psychologist who specialises in dx of ASD - it's your right.

If he won't do so then take it up with PALS.

Alternatively, as his behaviour sounds complex, ask GP for an immedate referrial to teriary dx centre.

You can't go on like this.

I applaud you getting tough with HT and Paed - but these tossers are the wrong people.

Get tough with GP and demand a specialist opinion. Paed is not a specialist in this field or they woouldn't have told you to see a (private) psych.

Best wishes

[TheArsenicCupCake]

Oblo...

Your ds is struggling, your struggling.. School are not helping..
But the most concerning bit for me is He wants to be dead and wishes he wasn't born'

go to your gp.. Give a brief outline of the struggle.. But make it clear that you don't know what to do and your ds wants to be dead...
Ask for an urgent referal to camhs based on how ds is feeling and what he has said.

[Oblomov]

I feel powerless.

Headmistress rang me. I had phoned to compalin of the teasing. He is called : "naughty boy", "bad boy", "minutes mintes minutes" , "i'm goin ot make you lose minutes".
She dismissed everything as over-exagerating.

I asked if a more postive way could be found. And she basically said no, this was their policy. I asked if she'd read pysch reports. she said she had. "and thta it cclearly says he is not AS". I asked her about , that the pych had recommended becasue of his poor theory of mind, he be treated as an AS child. she dismissed that.

I told clinical what was going on. she said she hadn't meant that, by her letter. I sobbed. Told her I felt hung out. I needed a daignosis, she couldn't give me one. there was nowhere left to go.
Its not that i want a 2nd opinion. I do value hers. Fact is he doesn't tick enough of the boxes.
THERE IS NOTHING I CAN DO. I am FUCKED.

I drive to see Deputy Head. His teacher last year, who i liked and he adored. She was as insistent.
Thy see no as beahviour in school. then why has he been losing minutes for a month, had a beahioural chart for 2 weeks, and losing 15 mins per week.

she said the children who reported these things were unreliable. how did the other children know he had a behavioural chart. ds says in was up on the wall. his friend said it was too. teacher denied this and said it was discreet.

Paed rang. suggested I take the Tony Attwood book and show them his As traits. But as i said to him, head says he is not As and won't budge.

I asked deputy, becasue he has said that he wishes he was dead, and hadn't be born. to atleats see what could be done.
ie positive.
she said something like" why should he be encouraged, when the other children do ths naturally."
This just about summed it up for me. I told pysch and Paed that they blamed his recent behaviour in school ont he fatc I had taken him to be assessed !! Paed and pysch said this was out of the 40's !! But it was SENCO who told me that he needed a pyschologist.

I give up. They refuse to do anything other than their standard discipline policy.

I have tried appealing to them, but they just won't have it.
I have a child who is struggling, but with no diagnosis, I have nothing.

NOTHING.

[SantasMooningArse]

ima yes, ds3 becmae more clearly ASD as he aged; he was diagnosed at 6. At his first appointment at 4, I don;t think ASD would have been raised had it not been for the already diagnosed sibling- think they;d have looked at GDD or mosaicism and then only discoverd the ASD way down the line.

I don't think that's uncommon.

[imahappycamper]

Tony Attwood talks about a 100 piece jigsaw. Most people would have 10 or 20 pieces of the jigsaw but not enough for a diagnosis (paraphrase). Your child sounds like this. Some very clear pieces of the jigsaw but not enough to fill in the whole puzzle.
TA also says they need to be treated as having AS for the aspects that they do have, which fits with what you have been told.
My DS would have been like that if assessed as a young child, but more pieces became apparent as he got older and he was eventually diagnosed at 12.
What is it that makes you so sure the psychologist is wrong? Most people seem to say that a private specialist report is better than an NHS one because they go into more detail.

[SantasMooningArse]

Argh have responded to thats everal times and a tantrumming toddler just switches PC off LOL

At unbi they repeatedly emphasise the Psychi / Paed only dx thing BUT

A) We're not in England and things can differ more than you;d think here- social work for example, completely different training system;

B) As well as copmpetence and training is the PCT's preferred diagnostic tools, PCT policy itself dictates who can diagnose; certainly our PCT has very different rules to where we used to live. Wouldn;t be the first time we we re taught local policy as more general.

I do know that at the tertiary clinic the Psychol cannot dx alone and that the PAed signs off but that paed is- ahem- a little bit, pushy. As in, she lectures on all the University courses whether asked or not, IYSWIM.

[SausageMonster]

A trained Clinical Psychologist is competent to dx.

An Educational Pyschologist cannot.

Psychiatrists can dx.

Paediatricians could dx if they have the necessary training in ASD and feel competent to do so, but tend not to.

Don't forget what a diagnosis actually is. It's an informed opinion. Opinions can differ.

[SantasMooningArse]

Oh and sorry- hearing tests actually relevant as hearing loss can present similarly to ASC in a child and should always be ruled out.

Constipation etc less so, very much a 'some people think....' thing

[SantasMooningArse]

(And yes, Psychatrist can diagnose, psychologist no EXCEPT sometimes they can get a dx 'signed off' if theya re exceptionally experienced- eg a local one is on the ASD NICE committee so the PAed just signs off her diagnoses, understandably)

[SantasMooningArse]

A Psych can diagnose ASD in fact- but only if trained. here for example Psychs see everyone referred after the age of starting school. IMO a multi disciplinary assessment such as 3Di is the best for comples children as it gets a rounded picture but that's area dependent.

You can't have a DX of traits of AS becuase that would simply be traits of ASD (the ansence of the language compenent itself being a trait). or PDD-NOS depending on child / diagnostician. You do however get poor diagnostcians, you just do; ds1's first paed said 'yes he has isues with empathy I can see immediately but you can;t treat AS so I will discharge you' (we moved and he got a DX, then a statement, and is up for a palce at a specialist AS school).

I have many reams of stuff on AS / ASD diagnosis on powerpoint I can send you (I already have several people to send to so not an issue) from Uni, just CAT me.

Also though I would consider speaking to one of teh charities dealing with children with SN such as Dyscovery Centre or BIBIC, an alternative source of help IME.

[telluthetruth]

ed psych cannot diagnose clinical psych can...this may be the cause of the confusion?? hth...

[Faaamily]

WA - a Psychiatrist is a medial doctor, so yes, they can diagnose 9although rarely diagnose AS, ime).

But I have always been told that a Psychologist cannot diagnose ASDs. I've been told this on MN, by other HPs and by ASD specialists. Am I wrong? (not being sarky, genuinely want to know!).

Oblomov, sorry this is so stressful for you. It is stressful getting a diagnosis. It took three years from the time DS's nursery teacher said she suspected AS and we went to the GP to getting a diagnosis. I really hope you can get something useful out of the Jan appt. x