I think my son has AS but CAMHS unit say not. Advice?

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My boy has just turned 13. We have struggled all through primary school with the teachers making us feel terrible. His behaviour in class was disruptive, he was being bullied and would often lash out. He seems bright but he just wasn't getting on the way you'd expect he should be able to and he has massive social issues.
He has no sense of another person's personal space, can't get a handle on when he's boring the backside off someone, he's only interested in video games and cats, he is disorganised, reclusive, has melt downs when he's stressed, seems incapable of noticing what other people are feeling unless you hammer the point home to him - no sense of consequences, flat monotone voice, funny walk, no empathy.....I could go on.......

So finally, he started secondary school and clearly wasn't coping. A friend who is a nurse nudged me in the direction of a description of aspergers and a lot clicked. We sought a diagnosis via our GP and ended up at the local CAMHS unit.

The first interview, which was with both me and I my son, seemed unremarkable - it lasted about an hour - but when we got the write up, there were basic factual errors about our family circumstances. My husband works part time and does most of the childcare as I run a business. They mentioned my husband as doing 'ad-hoc jobs' and failed to mention my job at all. The description of our family circumstance sounded chaotic - as if my husband were in and out of work and as if this was our sole income. I thought this was very insulting - because surely, if ASDs are genetic, then perhaps having a mum who has the more normal paternal role would be relevant. I have come to consider that I may be a 'mild' aspie myself and would think this background might be a consideration. I strongly suspect that my Father had AS - he was a very difficult person to know - driven but walled up inside himself - great with computers, terrible with people.
There were other factual errors too - it seemed as if they hadn't really listened.
Then several weeks later we had another interview - they spoke to my son for about twenty minutes and me for about an hour. I tried to do my best to accurately describe his behaviour. We had filled in questionnaires, as had his school. About four days after this interview, we received a letter asking us in for an ADOS - the next day. I scrambled to take time off work and took my son in. It was the eve of his 13th birthday - something that I'm now becoming suspicious of. The process of getting to the point of the ADOS had taken months - and all of a sudden, we were called in on almost no notice - on the eve of him becoming an adolescent. I find myself wondering if they made the assessments of him based on criteria for a child or for a young adult or adolescent. They discussed 'games' when they mentioned the tasks - so it seems they set him one of the children's modules. He's already learned coping machanisms that a child's assessment wouldn't make provision for.

Anyway, three weeks later we get called in for a discussion of the results and we are told that he doesn't have Aspergers - despite him having problems with social interaction. They showed us the write up of the ADOS. On every section they seemed to agree that he showed ADS traits - flat voice, restricted interests, lack of social skills, very specific recall of dates - etc - everything except the tics we had reported - which they say they didn't see (in the whole hour and a half they'd spent with him in total - so wow, they must be right!) but every single one of these was countered with some sort of limiting statement.
Yes he has a monotone voice but he sometimes sounds less monotone when talking about something he likes. Yes he is a bit expressionless but he smiles when talking about his cats. They even said that yes he has restricted interests but he does have more than one interest so he can't have Aspergers as people with Aspergers generally only have one interest - which sounds like c**p to me.

We tried to explain that we didn't agree and we were effectively told there was nothing much more they could do. When we asked about help for school (which we really need and the school needs) the Dr said 'but he doesn't have a diagnosis' - I felt like screaming. He doesn't have a diagnosis because you say he doesn't - but he still has all the problems that brought us here in the first place.
He has difficulty making friends, he's getting bullied because the other kids think he's weird and he's totally miserable. I can't see, that without some external support, we're going to be able to let him go out into the world. I can't imagine him managing. It terrifies me.
I spoke with his guidance teacher at school who was astonished that we had not had a diagnosis - she had assumed it was blindingly obvious that he has AS.
So what next?

just grasping at straws but would an NT kid with an aspie parent grow up with aspie traits even though he himself doesn't have aspergers?

I know I shouldn't have as many anger issues as I do. I thank my father for that.

I'm pretty sure my Dad was full on Aspie.
He couldn't make eye contact, could only just about bring himself to hug you, couldn't talk about feelings, couldn't understand anybody else's point of view.
Do I feel a little Aspie because I was brought up by him? (Single parent family from early teens when my Mum left us)

You may have a point but my own issues started in childhood - I just didn't know what they were till now. I see your point but my son has been this way from birth.

Shouldn't the school be trying to help all their students regardless of whether they are labelled with a diagnosis?

of course - but without a diagnosis they won't get funds from the lea to put support in place. Without a diagnosis we can't get an individual learning plan and without that, they don't have to do anything. SOme of the teachers are kind but a lot of people assume that if the dr says so, it must be so and we go back to them assuming he's lazy and/or stupid.
He may be stupid and lazy of course - but I think there's a bit more to it than that.

Since you are in a different country with a different system, I can't advise on what to do next, but it seems to me like the screening so far as been awfully light. 2 1/2 hours of interviews and testing, if I read it right? What about an IQ test (interest for how the component scores vary), on-site observation, letters from teachers and the school?

Would you be able to make an appointment for a private evaluation, or is the CAMHS it?

AS can be difficult to diagnose because it is a spectrum, and not all kids have all the traits, but your child sounds fairly classic to me, sharing a story with many other kids here. And even if he isn't full on AS, he may well be "almost" AS, kind of how I see myself, and you would think someone might at least say that, ie "he has many of the traits but not enough for diagnosis." If that had been what they had told you, you would probably still be disappointed, but you'd at least feel they had heard you.

Reading this did make me think of one more thing: get a list from the school of everything that might qualify your child for an individual learning plan and see if you can back door the supports you want through another title. That is actually how my son eneded up with the AS diagnosis - we knew we needed support, but we didn't know he was AS, and when the IEP team went searching, AS is the label they found. Some other potential qualifiers were close, like disparity between tested IQ and performance, so maybe ...

HI DW - I've spoken to the Scottish office of the autism society and they are going to help me - they can help with diagnosis.
I think I just wanted some reassurance that my dissatisfaction with the diagnosis so far was fair.
My husband and I just couldn't believe that we were at the point of being told there was effectively nothing they could do.
We expected a much longer journey to an accurate picture of my son - instead I agree totally with your description - it's light. The psychiatrist kept trying to deter us when we disagreed with her findings by saying 'a diagnosis like this would be for life' - as if we don't know!
We're not done.

I found this post interesting, and it rang bells with the experience I had with my daughter. With us what happened is , I felt pretty strongly she had AS, the more I read about it the more I felt it fitted her to a T, but I wanted an experts' opinion. She's just turned 13 now. Anyway , I live in Ireland, and I had heard of this professor over here who has written a few books on Asperger's and I just thought he's the one to go to , he must know his stuff, so off I went.
Well he spoke to me for about 20 minutes, and he spoke to my daughter for , what, all of 10, 15 minutes? Anyway, after that he said, without a shadow of a doubt, she has AS, and gave me a (very short) report,( pretty much one paragraph,) and the all important label which immediately got her resources. So that was good.
However I was left feeling, hmmm, that was too quick, it didnt feel right, I wanted a proper assessement , I didnt even know whether she was considered mild, severe or whatever, so in the meantime I was on the public system waiting list for her to be assessed. Well I filled in all the papers, and so did the teacher, and what came back was they couldn't see her because she didn't match enough areas be on the spectrum. (I had told them she holds it together during school, takes part etc, but still, forms no friendships, is considered odd, and spends all weekend in her room with the curtains drawn, on computer games or reading, has meltdowns , cant handle going to town for longer than half hour, can't/ won't go clothes shopping, talked in a silly voice for years, doesn't seem to be able to have a conversation, pretended to be a dog, (which I always found rather sweet, the fact she liked to drink water from a bowl off the floor , ) and many other things. So, I just thought their assessment procedure completely lacking, because as far as they were concerned, that was us dealt with.
So I then paid out another whacking great sum of money and got a proper assessement with report, and what this one said was that she has shades of AS. Essentially. It also managed to get quite a few facts wrong, including my name and surname, (I got spelling variations).
So, we have a choice of three, well I've hung onto the short one because it gets her 5 hours of help which is helping.
Anyway, if you want to head over to Ireland I can give you the name of that doc, I don't mean to sound flippant but I'm 99 percent sure you'll get your diagnosis. And the all important resource hours.

Hey Catbalou,
your experiences with your daughter ring some bells.
When I'm trying to express what he gets up to, I forget so many - most of yours match mine - My son still pretends to be a cat. (sigh)
I'll see how we get on at the next juncture. It doesn't seem unreasonable to want a proper and thorough assessment of my son's needs, so that we can help him into adulthood. I can relate totally to what you describe - the diagnosis - the piece of paper that opens the door to help is part of it - but understanding your child is the biggest part of it.

I had lots of difficulties but thirty years ago, there was profound ignorance about ASDs - I learned to manage but not without some terrible experiences on the way. I was stuck in an abusive relationship for a while because I felt locked away and didn't know how to ask for help.
My son asked me outright, if it was true that you could go to jail for trying to kill yourself, if you didn't succeed.
I'm furious that we've effectively been shown the door on the strength of them spending a couple of hours with him.
His dad and I have had thirteen years - we know our boy.

Well exactly, of course you do, thats one thing the prof said, is that a mother is usually right about these things, nobody knows them like you do. As for myself , I'm a bit like DW I think, a bit aspie, a bit nt, one foot in either country. I didn't know about aspies either, and learning so much has made me accepting of those aspie parts of myself that always made me feel different, and of course understanding my daughter, I just wish I wasnt the only one in family who did!

Hi hrhpod

I can soooo sympathise with your probs with CAMHS, we had similar issues with them when we first saught help for my daughter. We live in England (although we're Scottish too), and we first approached them when H was 5 and had just started her second year of primary. She couldn't concetrate, sit still, was having major meltdowns, one memorable incident had 4 of us carrying her through the school, one person on each limb!! Had trouble with social understandings, had no imaginative play, endless list of stuff. So the school learning mentor came to us and suggested that she may be ASD, something I had never heard of. She got the school nurse in and did a referral to CAMHS. We got the ridiculous one hour interview as well, the psych then came out to a TAC meeting (never met H), and when the flaming learning mentor uhmed and ahhhed and said perhaps it was delayed emotional development, it was decided that was it, nothing else wrong. It then took another FOUR years of fighting to start the process again, during which time she had no support, and Bingo! Aspergers/Dyspraxia/ADHD. Still makes me angry that she lost out on so much support and guidance for that length of time. SO I would say to you, keep fighting, use every avenue open to you, the Scottish autistic society are supposedly very good, and will help you enormously. Also try and find out if you have a parent partnership near you, they will come along to meetings as an advocate for you. And if you need to chat please feel free to inbox me

Hi Smithie

the one of you at each limb scenario sounds familiar. I have a vivid memory of carrying R, aged 3, out of John Lewis rolled up under one arm. I had to put him down because I couldn't hold him and he lay on the ground paddling his limbs like a wind up turtle. It wasn't the only occasion we had episodes like this - but he was particularly feisty that day.

I feel very let down by his primary school. Every parent's evening, every phonecall from them - we would explain our fears and ask for help - and they always passed it back to us, stuff to do at home - as if we weren't trying.
I feel that trained educational professionals who see hundreds of children, should be more able to spot a child who may have an ASD than a parent who has much more limited experience - and lets face it, no bloody training.
His guidance teacher at secondary school is brilliant but she's the first person who has seemed to be proactive.

I'll look up the parent partnership - that sounds really helpful. Thank you!

Is it possible for the school to request a reevaluation on his behalf?

I've spoken to the Scottish Autism centre and they've outlined a process by which they can give a second opinion. Crucially they confirmed that they don't use ADOS because it doesn't pick up subtle cases and instead they spend a good half a day with a person - in a relaxed setting.

The Dr at the Edinburgh CAMHS unit kept going on about how they would expect R to be showing his traits at the ADOS because he would be 'stressed' in that setting.
She seemed incapable of understanding that he doesn't find talking about himself stressful - much as I love him, he does think he's the centre of the universe so a forty minute session spent talking about himself is a dream come true. We tried to explain this but it clearly didn't fit in with her tick list so she wouldn't accept what we were saying.

He's stressed when you've caught him misbehaving and you try and reason with him about the behaviour. Then we get complete failure to make eye contact, silence, complete lack of communication.

We also realised (and have since checked on this) - we should have been able to read the report from the ADOS prior to the meeting - instead we were stealing glances of it from the Dr's ringbinder - she wouldn't hand it over and she kept closing it, everytime we started talking. I had to ask her to move it further round so my husband and I could read it and to open it so that we could continue reading. And she wouldn't make a copy for us - although she did say she would have one sent out. It seems inconceivable that they would not send this to us, for us to prepare questions prior to the meeting, if the meeting was going to be such a short one.

That's good that you've had practical help from SAC. I agree about the ADOS. My daughter had one of those, which did point to aspergers, but it did say that she didn't tick certain boxes and that certain behaviours weren't 'typical' However we also did the 3di assessment which was a lot more in depth and certainly helped with the dx.

I hope that you will now be referred on for the 2nd opinion and that your son will get the help he needs