Possible Asperger's diagnosis - your stories plus advice please

[Toffeefudgecake]

I would appreciate some Mumsnet advice and wisdom from those who have been through it/ are going through it. My son (11) is off school at the moment because of anxiety issues. He has been assessed twice for Asperger's, both times by a clinical psychologist. Both times, it was decided that no further assessment was necessary. The last time (a year ago), the conclusion was that his 'language abilities are higher functioning than that found typically in individuals with ASD' and that his difficulties stem from anxiety and delayed social/emotional development.

My problem is that I am not entirely reassured by the assessments, particularly since this latest crisis. My understanding is that Asperger's can best be diagnosed by a multidisciplinary team, or by an individual with specific training in understanding Asperger's. Clearly, not every psychologist will have had this training.

I have asked for a referral to a multidisciplinary team, including speech therapists, for example, but this is not available to me so we will be referred to a psychiatrist instead.

What I wanted to know is: those of you who have children who have been diagnosed with Asperger's - who diagnosed it and how easy was it to diagnose? How many of you had to fight to get a diagnosis? And, those of you who did, are you glad that you did and has it been of help to your child (in terms of understanding and support, for instance)?

More background on my son: he is dyslexic and has suffered from anxiety issues since he was three (tics, OCD behaviour, meltdowns, to name the most obvious). He is quirky, but that might be down to his dyslexia and seeing the world differently. He finds social relationships difficult. He usually has one close friend at a time, but these friendships have broken down one after the other. He finds groups very difficult to cope with. He is bright and thinks deeply about things, but is also astonishingly naieve and ignorant about some things (doesn't know when his birthday is, didn't know the months of the year until we taught him recently, still believes in the goblins who used to leave him presents, was genuinely very upset to discover that Father Christmas didn't exist, despite being told often by his peers). Some of these things could be down to his dyslexia, others to his emotional development.

Over the past few months, school has become intolerable for my son. He feels socially isolated and is anxious all the time. He feels sick constantly at school and suffers stomach pains. He is taken advantage of socially and often feels used or else 'invisible'. He has cut off a close friend who he felt was bullying him. This friend has tried to repair the friendship, but my son is convinced that his actions were deliberate and won't see him. I can't tell if it was playground teasing that my son has misinterpreted, or if my son is right in his interpretation.

By last week, my son was so miserable that I had no choice but to take him out of school. The school have supported me with this and he is now off sick and being educated at home. At home, he is happy and relaxed. He wants to start secondary school in September, but we are concerned about how much support he will need to achieve this.

I read the recent thread about children with Asperger's. So many things sound familiar. I want to get my son the help he needs, but he is fed up with seeing professionals and I know it will be stressful for him to go through another assessment.

It would be useful to hear stories of other people who have been through this process, including those who did not receive a diagnosis, but maybe have children who are borderline.

I don't know what to do: should I accept the diagnosis and just try to support my son with his anxieties and other issues as best I can; or should I pursue the diagnosis and fight for the support and understanding he might need?

I can see clear signs of Asperger's in some ways, but not at all in others. Which is why I need someone I trust to give me an answer one way or the other.

... which is why you need to seek a diagnosis.

You said

"I know that with a diagnosis of dyslexia schools are not legally bound to observe a private educational psychologist's report, but my son's school did take notice of his, so it depends on the school. It's ridiculous that it is not a legal requirement, really, because you can only get a private diagnosis for dyslexia anyway. I'm not sure what the situation is for private diagnoses for other conditions. I know someone whose son was diagnosed with Tourettes privately and the school took notice of that. But, then again, the mother could not get a diagnosis on the NHS, so she had no choice and perhaps the school recognised that. I suppose the only thing you can do is speak to the school in question."

A privately obtained report is just as valid as an NHS produced report and shodl be =given equal weight. However the local assessors are 'tarined' by the LA not to make recommendations about levels of support or educational placements. Private reports are not constrained in this way so give an honest recommendation.

The school / LA can chose to ignore any report private or NHS, however if it does so and damage arises from their failure to follow the advice in a professionals report then they are leaving themselves wide open to (probably successful) litigation.

I have phoned the NAS Helpline and they have given me the name of people recommended by them who will diagnose privately. We will pursue a private diagnosis, but also stay within the NHS system in case the private diagnosis isn't recognised by the local authority.

WetAugust - I didn't know that local assessors were trained not to make recommendations. Thanks for explaining that and the issue about whether the LA can ignore private reports. You are right about needing a diagnosis.

Mumslife - thanks for your explanation about empathy.

I think I need to start keeping a notebook of possible Asperger's behaviour to use in an assessment. For instance, when we came back from a few days' holiday at my Mum's recently, my son was on edge all evening. Eventually, he took himself off to bed with a cup of tea in my 'Keep calm and carry on' mug (which I bought before it became so popular, to get me through a summer of extreme OCD behaviour from DS - at one point he wouldn't/couldn't even move because of all his obsessions, just stood in the middle of the room all day). I tried to talk to him about what was wrong. He couldn't really explain, except to say that he was finding it stressful to cope with the change of being back home again.

This morning he came down and sat on the sofa with DS2 and me. We were watching 'Penguins of Madagascar'. DS2 was laughing. DS1 shushed him several times, then burst into tears and stormed out. He told me later that he can't bear the noise of DS's laughter.

It is like walking on eggshells being around him.

Sounds like a good plan Toffee.

A diary is an excellent idea. I keep still keep one for ds as it helps us try to unravel why he is behaving in a certain way and is also useful evidence for docs and school etc. The only thing I would suggest is that its better to type it on your computer than write in a proper diary. I bought a huge A4 page a day diary and realised after a couple of meetings that it was unweildy (sp?) and it would be better to be able to print out the salient points before meetings etc than to be frantically flicking through the diary trying to find stuff during the meting. Also useful for printing of a series of things that show a particular behaviour or problem is regular, rather than transient.

Regarding the not being able to bear the noise of his brother's laughter. I posted a link to a youtube clip earlier this week. Its a teenage girl who has AS and in it she explains that certain noises and textures are actually physically painful for her. It really helped open my eyes up to how tough things are for ds. The video is if you want to watch it.

My ds is all over the place today after a quiet week at home, because he's been invited to his best friends house for the afternoon and its messed up his routine. He was so desperate to go though, so we couldn't really say no. Tomorrow will be worse, as dh and I are going out mid afternoon and won't be home until the small hours so Mum is babysitting (this is unheard of - we never go out ). Hopefully we can have a quiet day on Sunday to set things straight before school on Monday. He's always bad the first week back at school as well though.

Hello Toffee

I am in exactly the same position as you. My ds (6) has been assessed by a clinical psychologist as having 'anxiety issues' too (whatever they are!). The school think he has aspergers and so do I, I have made an appointment with the GP for a referral to a Paediatrician next week (we've tried to have a stress free half term as he hates school, but I was still up with him from 2-3.30 this morning - he has an issue with lighting, don't ask!).

I too keep a diary of his behaviour, there is so much that goes on in a day, it's very useful to be able to have 'proof' logged that you can refer to. Moosemama's idea is a good one though, I've got loads of scrappy bits of paper all over the place which just makes me look like a neurotic mother, which is how they want me to look!

I'm also contacting Integrated Services as the specialist teacher wrote an excellent report on ds that clearly states his problems.

Don't give up, you're doing the right thing for your ds

Thanks for the advice on the diary, Moose and Lamb. That's a good idea for me to put it on the computer instead of writing it down.

Moose - thanks for the clip. What an inspiring video. How awful to think that this intelligent, successful young woman would have been lost to the world if she hadn't had the help she needed when she was younger. It is interesting that she says that sudden noises are particularly painful and that noises don't necessarily have to be loud to hurt.

I hope your Ds copes better than you expect with the change in his routine over the next few days. It's good that he is willing to overcome his anxiety in order to visit his friend though. I hope you enjoy your rare night out.

Lamb - interesting that you have been fobbed off with the same excuse. I know what you mean about looking like a neurotic mother. I have had to put up with that for years now. I suppose it didn't help that I was a fairly neurotic mother anyway! However, in my son's case my concerns have been proven right over and over again. I met one therapist who seemed very hostile to me from the outset (not my paranoia - DH was there and agreed with me and was bewildered by it) and asked me why I wanted to 'medicalise' my son (this was during the summer of his not being able to move because of his OCD!). I had to point out that actually I didn't want there to be anything wrong with him, but clearly there was so I wanted him to get help. (Would have thought that was obvious! Silly woman).

I think having a diary would be useful also to refer back to on the days when everything feels just fine and I begin to doubt myself. Of course, there are days when my son is at home with us and is not stressed, when it seems that there is nothing wrong with him at all. On these days, I wonder how I could ever imagine he has Asperger's. Then he will have a meltdown over something - like his brother laughing - and I am thrown back into confusion again.

It is good that you have the school's support, Lamb. Have you contacted the NAS Helpline at all? It's on 0845 070 4004. They can send you lots of information and also advise you on seeking an assessment (NHS or private) with someone who understands and can recognise autism. But, hopefully, you will find that the paediatrician is helpful. Good luck next week.

at being accused of wanting to 'medicalise' your ds Toffee ! Unbelievable the things 'prefessionals' feel that they can say to us isn't?

Thank you for the phone number, duly noted. Can't contact enough people on this fight mission.

I also know exactly what you mean about sometimes thinking everything is fine and ds is 'normal'. My ds is great 1:1 when he knows that person; eye contact, chatty and funny, but chuck him in a crowd or a big open space like a park then his behaviour is definitely odd. This is what made me so mad about the psych assessment; first couple of times he met her he told her he didn't like her and just played with his cars on the floor ignoring her, then by the third session he was 1:1 with her and they were playing together. That is not real life. She should have him to stay in her house for 24 hours, then take him to school and pick him up then she'd have half a clue!

Yes, it is unbelievable, Lamb. You have to grow a thick skin.

Re: everyone thinking your DS is 'normal': Tony Attwood, who wrote a book about Asperger's (worth reading, if you don't know of it already - 'The Complete Guide to Asperger's Syndrome') made the point that the child with Asperger's seemed to be 'cured' when he/she was alone. He pointed out that it is only when a child with AS is with other people that the problems arise. My son can be fine one-to-one in a familiar situation, but finds groups and new situations very stressful.

at sending your son to live with the psych for 24 hours!

I've been meaning to get that book, I've heard good things from other posters on here. Until recently though my dh thought I was being paranoid (he doesn't see him before and just after school or with other kids). I had to remind him why we don't take ds shopping anymore. Anyway that was why I didn't get the book, he might have thought I was 'forcing' aspergers onto ds iyswim; looking for problems and making them fit. Too many people agree with me now though (although not the - right- people).

I do hope you get the dx soon life's hard enough when you're becoming a teenager your ds needs to know he has support and that he's not weird but that it can be a gift if handled properly. At least he's got you as his mum .

It's worth reading. My copy has lots of pencil marks in it, where I have recognised traits in DS.

'At least he's got you as his mum' - thank you. I'll use that in my armoury against the less pleasant comments, such as that quoted earlier.