Starting on the road to ASD / AS diagnosis

[nenevomito]

My 4yo DS has been referred to the Ed Psych in school and also for clinical assessment by the GP for possible ASD / Aspergers. I say possible as we're just at the start and nowhere near a dx yet, but that is what the GP is looking for.

When he was at Nursery, they would report him getting frustrated and angry and that they thought it would do better in school where it was more structured. He started school in Sept and by the end of the first term, they wanted to talk to us, not because he was being naughty or unpleasant, but they were worried about what would happen when he moved into Y1 where things were more structured as he was lovely, but struggled in the classroom environment.

They also explained that he was struggling socially - in that he was happy for other children to go and play next to him, but didn't seek out friendships and was alone. He has some imaginary school friends that he plays with and tells us about. School have said since that he plays with another boy, but if I ask DS if he has played with X he just looks blank and doesn't respond.

The school have been brilliant. First off for picking something up early and doing something about it, but also because while they have not mentioned ASD / AS themselves, they have alerted us to a lot of things that DS does that we are used to, so don't notice any more, but are not within "normal" ranges of behaviour for school. They are working with the EdPsych to sort out how to help him out best in school and gave us enough information to go to the GP. It's not all ASD assessments though, as school are also saying that in some areas DS is "intellectual" and they believe he is G&T in terms of language and creativity, so on top of having to suddenly learn about ASD, I'm having to learn about what the G&T support entails as well.

The GP was very to the point and said he thought it was more about where he was on the spectrum rather than whether he was on the spectrum or not and has been supportive, but the process for assessment as I am finding out, it going to be a long one.

This is turning into a long one - stay with me if you can!

The problem I have now is support for me. I tried talking to one friend and her response when I was trying to tell her about it was "oh well all children do that, its nothing". I couldn't get through that if I have 3 teachers, a SENCO an EdPsych and my GP saying that it is something, that I have to take notice. Also she said "well my DS does that, and he's OK" as if she wanted to reassure herself.

My other friend was very much saying "well you don't want him to have a label" and "aren't you worried about labelling him so young" and "it all sounds like an overreaction to me." When I tried to explain that I just wanted to make sure that if he does have aspergers or ASD he gets all of the support he needs she said "well I wouldn't want my child to be labelled like that". At that point I wanted to hit her and say "Oh and you think I do?" Of course I would rather we weren't going down this route, but what am I meant to do? Say, thank you school and GP, but I am going to ignore your advice as I don't want my child to be labelled. Surely getting him the right support is more important?

My parents know, but Mum thinks that its poor teaching?!? at the school and Dad thinks that its just because he's young. Both think I am doing the wrong thing having him assessed because (and get this) "It will be on his record forever". What is that meant to mean.

Where this leaves me is with all of the worries and upset and concern that any parent has when they are told there is a problem with their child, but friends and family that I have just given up even trying to talk to. So I am here. On the internet. Telling Strangers, who if they have got to the end of this post deserve a medal.

Thanks for reading.

Crikey, this is all so familiar I feel like I could have written it myself. I've been posting a link on here this weekend to a blog I have been writing about my son, aged 3, who has just been diagnosed. Some of it might have revelance. We're a little further along in that a diagnosis has been made. I think it is worth remembering that you know him best and you should trust your own instincts.

My blog:
autisticson.wordpress.com/

Thanks, will do. Thought I might have killed the thread, as I have a bit of a history

I think the paediatrician only suggested giving the questionnaire to the gps because they are regular caregivers, having looked after ds 1 day a week sine he was tiny. I imagine they're just after as many different perpectives from people who know the child well as possible- it wouldn't necessarily have to be gps.

I'm reading the Tony Attwood book too and finding it really helpful.

I absolutely understand the doubts about whether you're problematicising your ds unnecessarily. As other have said, most asd traits are like what other children do, it's just the frequency and intensity which seems different. I work in a research department specialising in developmental disorders and have long suspected that my brother is (undiagnosed) AS, so I am probably hyper-alert to any warning signs in my dses. But the bottom line is that the niggles don't ever go away for good, even when he has days or weeks of seeming completely fine. I'd rather be over-cautious and be told by the assessment team that he's sub-clinical, than find out in several years time that he is AS and I could have got some help for him earlier.

Would your dh read the Attwood book?

Evening, just a quickie.

Babyheave, we didn't have questionnaires for anyone other than dh and I to fill in. I think we did three in total, the main history and concerns one, a sensory profiling questionnaire and a communications skills checklist - oh and the Paediatrician had both us and the school fill in a Conners questionnaire as well just to rule out ADHD, even though they were 99.9% sure he didn't have it - he didn't/doesn't.

ADHD isn't something I am worried about as he doesn't have problems with any of the key indicators for it, but its good to know what people may be talking about!

I'd only heard of Aspergers in passing until this started. I had someone mention that DS had some strange behaviour but I ignored it as I thought her DS was a bit weird as well. I actually used her DS to back up to DH that our son was like other boys. DH has always commented more on DS's behaviour than I did, but I was always the one saying, no its OK. No, he's just bright. Oh the irony that its the other way around now.

3 months wait for an assessment - It seems like I will have to stop being impatient and get used to waiting.

I guess the questionnaires that we're doing atm are more preliminary- more a general description of concerns. I imagine we may get the more specific communication, sensory sensitivity etc checklists that moosemama mentions if we go on to ADOS? The procedure no doubt varies in different areas though.

Oh, Babyheave, I've gone through wavering, thinking 'It's all going to be fine'.

And it might be. But it might not.

The only way to be sure is to go down this horrible assessment route. I can remember crying in the night, waking DH and saying "DS2 will be fine, there's nothing wrong, is there?"

The waiting is murder. They are so little, it's such a big % of their life that you now have on hold. But you just have to keep going, helping and supporting as if there is something. It will do no harm to treat your DS as if he does needs help.

Sorry, woofie, cross post. You seem to be holding it all together. Or is that just on the outside?

bsdad- I've just read the most recent posts on your blog. It sounds like you've been putting such a lot of thought and effort into helping your ds. I'm glad for you that the diagnosis has come early, so he has the best possible chance of early intervention. Really interesting to read how the diagnosis affected you and dw, despite all the preparation you'd done. I think we will/ would feel very similarly- in my head, ds1 is AS, but it would be different hearing it from a professional is different.

Ha ellenjane- yes and no! On the one hand, my rational mind points out that I've worked with plenty of children with ASD who are doing fine at school and will probably go on to have fulfilling work lives and relationships. My ds isn't discernibly struggling at school or at home yet. On the other hand, after feeding ds2 in the middle of the night I often can get back to sleep for worrying about ds1 and making the (unhelpfuland irrelevant) comparison with my brother, who despite making it to Oxford (and dropping out after a year cos he couldn't handle the social side of college life) has really not managed to thrive as an adult in society. But those were the bad old days when nobody knew about ASD...

Dh is v supportive and upbeat, which helps.

How old is your ds and did he get a diagnosis?

can't get to sleep!

DS2 is 11, and got his DX aged 3.5, about 6 months after paed saw him first. I'm fine with it now, but even after 8 years I can still remember how painful it was. I find it really good to try to be helpful for others, makes it seem more worthwhile and I can feel good about myself. Selfish really!

Woofie, my DS is heading for college, it's got easier the older he gets.
We've been able to access a lot of varied support along the way and it looks to continue through his A levels. There is a lot more awareness now, at least HFA/AS is recognised as a specific need.
Socially he's managing much better at 16 than he did at 10 and has a number of hobbies and activities he is passionate about.
So I'm less worried about his future than I was IYSWIM.

Sorry ellenjane- just read back through thread and about your lovely-sounding ds2- had got muddled up with names- so ignore the last bit! Bedtime...

Night, woofie. Goblinchild, you are up late again! Off to bed for me, too.

X-posts

ellenjane-not selfish in the least, and extremely helpful.

goblinchild - that's great that your ds is doing so well at secondary. V reassuring, as that's the age I worry about most I suppose.

Thanks again for all the info and shared experiences. Glad I outed myself as an SEN board lurked now

GAH lurker! cursed phone. Bed

Goblins are nocturnal by nature.
I'm working too, flitting between stuff.

Hi Babyheave

Just found this site and your thread is the first I read.

Was sitting here thinking about what you said....

Remembered some things I was told.

A teacher told me that they can get penalised if they "find" too many kids with problems in their classes. They can be seen as a teacher trying to pass off their inadequacies. I was told this was why it is almost impossible to get any school to initiate any action into investigating adhd, ASD, etc..

Your kids school is prepared to say he could have a problem...

Er...I wouldnt worry too much about whether or not you are overreacting.

I would suggest that you have a chat with the school and see if you can come to an informal agreement whereby they suggest what you do at each stage to compliment what they are doing. Reason being, there are a lot of things a parent can make happen by talking to the right person at the right time, while the schools hands are tied by red tape and politics.

Non stop talking? sounds like a motormouth aspie. I am one of them too.

Had a look at your list.

No problems with:-
Loud noises
People talking too much
loud colours
rattling things
banging noises that he didnt get to cause
sunlight being too bright
problems with stinks that no one else can smell
problems with noises that no one else can hear ( I can hear electric switches humming)
weird diet
Being awake at strange times
headbanging
biting himself
lauging without reason
doing the same things over and over again
leaing up and down shouting
arguing about everything
getting in a complete mess if he discovers that something he "knows" turns out to be wrong
taking everything literally "im going to paint the town red tonight"
hating clothes
reacting like he has been stabbed if he gets touched featherlightly.
not liking clothes
needing to do things in order
lining things up
understanding other have feelings

I want a bean and whiskey sndwich, then Im going to bed.

Gnite.

Hi all

asdad - I'm looking at your list. Some of them would certainly fit, but others not. It's like a written list of "well he doesn't do that, so..." followed by "well that would fit so..." Some of the things could be put down to his age.

The ones that stand out are...

Loud noises - He used to physically drag me out of playgroup when the singing/instrument bit started at the end of the session and beg me to leave. If we stayed so dd could join in he would stick his hands over his ears and go and hide under a table. He does like music though and will listen to it happily elsewhere.

The other ones are...
weird diet - Fussy in the extreme. But could be his age.
Being awake at strange times. - Didn't sleep through until he was 18mos and it isn't great now.
biting himself - Yes, and hitting himself. We had to work hard to stop the latter.
Doing the same things over and over again - Yes. If I have to watch his favourite film once more I will go and kill the MD of Dreamworks for making it in the first place.
leaping up and down shouting - not shouting, but noises.
getting in a complete mess if he discovers that something he "knows" turns out to be wrong - hell yes
taking everything literally "im going to paint the town red tonight" - yes, but he's 4, so it could be an age thing.
Needing to do things in order - yes

As I read down the list, there were some that I just don't know whether he does or not as its more about how he feels than something that would be obvious externally.

I will allow you all to have a little laugh at me now. Imagine me lying in bed last night. I have two books open. Young Gifted and Able and Tony A's Aspergers book. Swinging from "I think he's just gifted" to "I think he has Aspergers" depending on which I was reading as I flitted between them.

The fact is that I just don't know and won't until I have been through the assessment process.

I am feeling quite anxious about the meeting on Wed and I don't even know why. I do hope that DH has swung back into the "there may be an issue" camp by then so I don't feel quite so out on a limb.

Hi babyheave,

Your situations strikes so many chords with me. I have a 3yr old DS and other than not being quite the same age I think my situation is almost identical to yours. Like you I have just started the process of getting him assessed (appt with community paediatrician in 2 weeks) and like you this is all new to me and I feel pretty clueless and a bit scared.

My DH doesn't really think there is a problem which makes me doubt myself daily and wonder if I am catastrophising (love that expression!). Good luck for Wednesday and hope your DH has swung back - maybe just going to the appt with make him swing back? - of course you're nervous - this is a massive deal and he is your beautiful son. Will be reading with interest - good luck x

the thing with lists of traits is that no-one will have the same list, no-one has all of them and which ones they do have varies

the only thing that is absolute is the triad of impairments

does Attwood's book have the diagnostic criteria? I've not read it in a while so I don't remember

Babyheave - your initial post made me laugh, because I was just mentally composing my post about my son, and your description of him, school, and the class 1 leap was exactly what I was planning to say about mine!

Not sure that helps much, but I certainly found it strangely comforting :-)

Chelsea - it is comforting, isn't it. I lurked for ages before posting as I felt a bit of a fraud as he didn't have a dx yet. The final straw for me was finding that I just couldn't talk about it to my usual circle of friends as they just didn't "get" it.

While I wish that none of us was going through this process, its been so helpful to find that I'm not alone and there are others who are either going through the same thing as me or have been through it and are on the other side. The need to do the right thing, going against my natural denial is quite something and its been very cathartic to get it all down.

Hi Babyheave

That list isnt even close to definitive, but may give you some more ideas as to just how many strange and wonderful things you find in the worlds of Aspergers.

Flitting from ASD to G & T? Er.... Many Aspies are of well above average intellegence. They just use it differently. There is a really good chance he can be both.

Panicing before meetings is, I believe, something we all do. Accept you will panic and then dont worry about it when you do.

One thing you can do that will help you through all this is to keep a scrap book diary.

Use your mobile phone to take pics of what he does and what you do with him. Take pics of him doing, rather than posing.

Transfer your pics to your computer, then print them out as pages of thumbnail images 2 inches across ish.

The diaries need to be a page a day A4 business diaries. You need one, and so does each of your children.

I collect pics during a month. Around the end of the month I print a set of pics of each child of them doing stuff, and a mixed set for me. We take our diaries and our pics, with some pritt sticks and some pencils for drawing, to a cafe and stick them all in.

The books do not contain any feelings. Just "I did this!" type comments.

When I go to a meeting, We take our diaries. The kids are happy to talk about them - giving the doctors a way to get the kids to talk, and they get an insight into what they are like.

So....When I say my little one made a winegum and chocolate spread pizza and ate it laying in his boat that he built in the garden with a cardboard box on his head.....They believe me.

One more thing that may be worthwhile considering...

I am so very glad I am an Aspie. Wandering about looking normal is a bit of a struggle for me, but then, when no one is looking, I can do all the things that I like doing that they cant even imagine, let alone do.

Aspergers is far from all bad.

Good luck on weds babyheave- do
let us know how it goes. Hope your dh gets back on board for you.

It sounds like you were looking at two sides of the same thing last night! As asdad said, I believe plenty of people with AS are gifted in their area of interest- definitely not mutually exclusive. With my ds it's reading and numbers- anything involving symbols I think. I once described to him (aged 4) what an accountant does, and there was a hushed silence in the back of the same til he whispered "i'd love to do that."