non-typical presentation, or flailing in a sea of too much information

[PfftTheMagicDragon]

DS (5, year 1) is just starting a CAMHS assessment. I asked for the referral as he seems to be experiencing high levels of anxiety that have been starting to affect his every day life. Tied in with this are some behaviours that have never really resonated with me before, but when filling in the common assessment form, I realised how much we had adapted our normal life for his quirks.

The choice appointment with CAMHS has led to an appointment in June with a clinical psychologist. I was told at the appointment that it was likely he has some social anxiety, possibly some separation anxiety issues, and "other things".

I have spoken to the SENCO at the school, and DS's teacher. They have both been very helpful, the school has been amazing. They have set up an action plan for him, talked about how they can help him, removed anxiety cues from his school life.

The SENCO spoke to me today and I asked her if she thought that DS might possibly be somewhere on the spectrum and she said "possibly". She said that he exhibits several behaviours that are typical:

He cannot make choices (this triggers his anxiety and he freezes or more),

He miscontrues social cues (gets very upset when people do not say please or thank you at school for the smallest things, cries at home because someone was rude to him - they didn't say thank you, or similar), and that

He exhibits some obsessive behaviour. Mainly this manifests as straightening products on supermarket shelves, but he has been obsessed with closing doors and gates for years.

BUT she said that aside from those, he doesn't present typically. He is very emotional, overly so.

I don't even know what I am asking. Are anxiety and ASD/AS linked? I've not talked to anyone else with experience in this field? What sort of things should I be asking/looking out for at the next CAHMS appt?

Apologies for the length and the aimless point of my post, I suppose I'm just after some experience and advice. I know that I can't change any possible diagnosis, I just wonder what the different outcomes will be, a child with A/S or one with Anxiety disorder. Of course, he is still my lovely boy.

I think the thing to look out for is that it's not necessarily "diagnosis x" or "diagnosis y". It can sometimes be "a bit of x and a bit of y and ...". For instance, I know that ASD and ADHD can be co-morbid and anxiety eg and adhd do sometimes go hand in hand. Or, alternatively ASD and ADHD and OCD and Anxiety and various other things have similar symptoms and it takes quite a bit of teasing out sometimes to decide which one you are looking at. So at the next CAMHS appointment I'd be asking them about differential diagnosis (ie how you tell you have x, not y and not x-and-y) to which the answer would usually be "by doing a shedload of questionnaires" - but I'd be wanting a bit more detail from them than that. .

Re: typical presentation - well, who does present typically? OK, obviously some kids do, and those are the ones they write textbooks about. But it's a bell curve, and surely out of 100 kids only one will sit in the absolute middle, being 100% "typical". This is where CAMHS are supposed to know more than your SENCO, who will have been reading the textbook - hope this turns out to be the case for you.

Thank you for replying, r3dh3d. Thanks for the stuff about differential diagnosis, I'm starting to make my notes for CAMHS so that will be useful.

It feels like I started this process for one reason, and as the process goes on, it becomes clear that there might be something else at work, something that I didn't even think about in the first place.

I just want to do right by DS.

My DS was diagnosed with Aspergers at 12. One of the Paed's reports says that earlier he had not fitted the profile of any particular condition,(ie bits of lots of different conditions were present) but that as he got older more things had emerged which made a diagnosis appropriate.
Your DS could be like this. People tend to want an early diagnosis, but it isn't always appropriate. The important thing is that the school are doing what they can to help your DS, whether he has a diagnosis or not. A lot of people on here would be really envious of this.

happycamper I know that I have been really lucky with the school. They have been so supportive, I've had regular meetings with both his teacher and the SENCO, they have put measures into place. HE can't make choices, so they immediately ensured that he was never put into that sort of situation. They are very thoughtful with him, particularly impressive considering that they have 2 other children in the class with ASD, so plenty to deal with already. They have him in a small nurture group and circle time with the SENCO once a week.

I don't want a diagnosis, to be honest it is quite a shock that I might be facing one. I get so used to other peopl (who don't spend that much time with him) that he is fine/just sensitive/just shy that I get used to it.
That's interesting, that the symptoms can clarify after a few years.

Are there any books that you can recommend?

toughas my DS has those issues (that your DD has) as well. Thank you so much for your post. At what point did it become clear that it was not just anxiety that you were facing? Did you realise before the diagnosis?

Both schools that DS has been to have told me there is no way he could be autistic, but that he is just very sensitive. e.g. even at 8 he still cries in class if things aren't going his way. I was therefore very surprised to find out that not only was he autistic but it was actually quite severe (I had always assumed he would be borderline if he was assessed).

DS was initially diagnosed by a community paed as having school related anxiety producing asperger type symptoms. Anyhow, she did give me one useful piece of advice that when he moved schools (new area) if he was anxious still in 6months time to have his anxiety relooked at. Very glad I did, the anxiety team saw straight away it was probably AS, referred him to the ASD team and within months he was dx-ed.

DS at 5 had massive massive problems making choices, even if he made a decision within minutes would be throwing himself on the floor crying as it was the wrong decision.

Book wise I would recommend The Complete Guide to Aspergers by Tony Attwood.

Pfft, I think the pragmatic way to look at the diagnosis process is: "what do we get out of it?" If more accurate info gives the school more ideas about helping him, that's a benefit. If a diagnosis make it easier to get a statement and a statement gets the school more funding for him, that's a benefit. If, as he gets older, understanding why he is different makes him less anxious about finding social situations tricky, that's a benefit. And as has often been said on here, if it walks like a duck and quacks like a duck, then treating it like a duck isn't going to do much harm. So if you got an ASD diagnosis and it later turned out to be something else with very similar symptoms - well most of these interventions treat the symptoms so you're not going to have done anything wrong. Then again, it wouldn't be a good thing if you got a straightforward ASD diagnosis and were stuck with it, and the school was stuck with only using approaches designed for ASD despite it becoming increasingly clear over the years that there was something else entirely going on.

So I guess the pragmatic thing to do - talk to the school, see what help a diagnosis would be to them. Talk to CAMHS as the process evolves; get a feel for how "definite" they think diagnosis would be in his case. And probably go for a working diagnosis of whatever (if anything) as soon as they feel reasonably certain - but keep a very close watch and go back to them as soon as you think that diagnosis isn't fitting any more.

My DD1 was shy and sensitive for 12 years. Whenever I questioned myself as to why things seemed to be so much harder for her than her peers I was reassured by others or myself that I was being over-protective and the problem was mine not hers.

Our world fell apart when she started high school. She had been just about coping all through school but high school was too much and she went into meltdown. She was in a terrible mental state and didn't attend school for a year. CAMHS actually told us to tell her she wasn't going.

I had the same experience as toughas in that I realised while talking to the psych how much our life had adapted to meet her needs and that those needs we linked to ASD.

It took a year to get her a formal diagnosis and a place in a mainstream autism base in the same school. She is now sorted, happy and whizzing academically.

My 8 year old is going down the same road and sounds very similar to your DS, Pfft. I am pushing to get her a diagnosis because I know she won't cope at middle school and she needs the support that a diagnosis brings with it. It don't want everything to be on hold for a year waiting for a diagnosis again.

I want to save my DD2 that horrendous anxiety which destroyed a year of DD1's life but I also want to give DD2 the gift of understanding herself. DD1 sat in tears a few nights ago telling me how wonderful it is to know why she is how she is and to feel like part of an exclusive club rather than a total outcast. She never understood why she tried so hard to be accepted yet her 'friends' always turned on her. Now it makes sense she can forgive them for doing it and herself for getting things so wrong.

A diagnosis isn't an easy thing to accept as a a parent but it isn't going to take anything away from your son. He will still be the same person you love today. It might help make him a happier person as he grows up and be a key to future support that he needs to get an education.

Did the SENCO actually say that being emotional wasn't typical? Because the whole emotions thing is much more complicated than that, lol

ASD and anxiety are linked, very much so - not in a child that has anxiety must have ASD way, but ASDs can cause massive amounts of anxiety.

littlemiss Thank you for that book recommendation, and for your words about your son. It's so strange to see so much of your own child in someone's description of their own

That post was incredibly useful to me, r3dh3d, thank you. I feel a little better going towards the CAMHS appt knowing a little more, knowing what to ask. I hate feeling a little lost, this is not my area of expertise as well.

Al1son we have had these issues. It wasn't until talking it all over with someone that you realise, yes he does this, yes he does that. Put them all in one place and you think "hang on...". But then other parents, who perhaps see him for a short time when he is relaxed and doing well, brush it off. I know that they are only trying to say the right thing, but multiple people telling you this really starts to make you feel you must just be a over concerned helicopter parent. I was so relieved at the initial CAMHS appt when he said that I was right to come.

He is going through a good patch at the moment (though I do see that part of this is the changes we have made - so he's good, with the changes, this lulls me into a false sense of security. But part of me dreads the start of the new term, and then next year. The school are doing a transisition book for him, with information about next years teachers and such.

tabulah Yes, she said that children with ASD were typically unemotional. I'm afraid that I don't have enough knowledge on the subject to be able to challenge her at the time. I think I will give her a pass on this one, as she really has been so helpful to me and DS. Though I will do my own research from now on, I think

I do wonder if the anxiety is caused by something else, not a product by itself.

oh I wasn't meaning go in and tell her she's wrong, lol, if she's helpful and you're getting on well, that's worth way more than a bit of point scoring.

My son's over-emotional (Asperger's), it's a bit like, everything is of the same importance, so if he's upset he's just as upset because someone wasn't in when he wanted them to be as he is when his pencil breaks when he's writing or when the dog died, they are all capable of reducing him into inconsolable floods of tears. Also he's never learned to not show any of his emotions because they're not socially acceptable, so little things that other people would just not mention and just feel a bit annoyed or upset about - he'll still react to in that over the top way.

He does have trouble recognizing some emotions, excited for instance is looking forward to something happening, so he won't have it that being giddy and silly when he's happy or doing something stimulating is being excited, lol. Though the big ones, happy, sad, angry - he's perfectly capable of recognizing that he's feeling.

Some people with ASDs don't display emotion, some display them but aren't able to express what emotion it is verbally and some can do both - but, it's the learnt ones that are different. So things like being pleased with an accomplishment, they don't automatically share that with someone, because that's a learnt response and involves knowing that they'd have to share it for someone else to be pleased about it too.

Uta Frith has some interesting stuff about emotions and autism, I saw a lecture by her where she was saying that they've done brain scans and people with all forms of autism definitely feel emotions, but there's some interference between feeling them, displaying them and being able to explain and share them and how much varies because of where people are on the spectrum and how that person is affected. I haven't read any of her books, but I was quite impressed by her lecture, I just haven't got round to buying any yet, lol.

Anxiety, I saw a really good explanation of how ASDs cause anxiety on here the other day actually but for the life of me I can't remember which thread.

I know for my son, it's again that everything is of equal importance again, so for example, catching a bus - always a fun one, lol. Buses have timetables, they're supposed to be there at that exact time, if they're not, then how can you trust that anything else about the bus journey is going to be ok, it might go to the wrong place, the fare might be different and he won't have enough money, there might be people he doesn't like on it, so because it was 2 minutes late he might end up not having the right money on a bus with people who are being mean to him and end up lost in a strange place, so it makes him anxious.

and everything's like that, so it's a case of if anything makes him anxious in anyway it can lead to a massive meltdown, even though it was a tiny thing that set it off to start with, lol

but he's older and able to tell me all that and you can then explain why it doesn't automatically follow on that way...which helps.

Don't know if any of that was helpful at all, but hopefully it was at least marginally interesting,

Everything is the end of the world for DS. The smallest things set him off. He will decide on the way to school that he wants to go in with a specific person. If this is not possible, floods of tears. If he drops an ice cream on the floor, floods of tears. If his sister blows a raspberry at him, floods of tears.

I'll keep an eye out for Frith, thanks for that. I started of with books about shy children. When he was 3, I thought he was just shy. Then as he's got older, I've progressed to reading about anxious children and now here we are, moving on another step.

It was interesting, it's great to hear about other people's children, the struggles that they face and the little quirks that you get so used to writing off as nothing, but they actually are something.

My DD1 does get very emotional but only expresses her emotions when safe at home. In school her face is blank, so she goes from one extreme to the other.

I put the anxiety down to living in a world where things can go wrong for her very quickly and easily, especially in school. There is a lot going on socially that she doesn't understand, things happen unexpectedly which is quite shocking for her and she can experience overwhelming sensory overload at any time. She feels worried at school because the bell could ring, someone could start shouting, other children could be laughing at her, a new teacher could walk into the classroom, she could accidentally do something wrong and get into trouble and worst of all someone could agree to do one thing and then do another. All of those things should be manageable for a 13 year old child but they aren't and she's in a permanent state of anxiety looking out for them.