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Got the Dx of autism for 2.3 DS. Have questions...can you help me understand?

(26 Posts)

Hello again and thanks so much for the support whilst I waited for DS Dx.
I have just got it but whereas I would usually get a meeting with th Ed psych who wrote it, she is now til mid April so we just have the draft to work with.

Thanks to all the fab posts of yore on this board and google I have managed to learn quite a bit over the last few months but now the report is here I have some questions, and was wondering if you could help?

Firstly, I thnk because AS is beng dropped in the next DSM she has instead diagnosed 'autism' and said 'currently his symptoms are mild'.

I have all the tests administered and their results. They started at the initial MCHAT and then we had...
Autism Diagnosic interview - revised (ADI-R) over two extended interview sessions.
*ADOS model 1 - pre verbal*with sme stuff from next module as DS is speaking in 5-6 word sentences at 2.3.
Conners Early Childhood (Conners EC)
Developmentl Profile -3
Childhood Autism Rating Scale - second Edition (CARS2)
Vineland II

Which looks pretty comprehensive. No SALT present though and no second Paed/psychologist opinion yet (they will take a look later - this is draft early report).

I will just give the ADOS scores as that is what I think most people here will be most familiar with as is used in UK as well (I'm an expat)

ADOS total score 13 (autism cut-off =7, autism spectrum cut-off =12
ADOS communication score 4 (autism cut-off 4, autism spectrum cut-off =2
ADOS reciprocal social interaction score 12 (autism cut-off =7, autism spectrum cut-off =12)

She also said (amongst a lot of other things) that he is showing early signs of hyperlexia, presents with particular impairment in play and social skills, and nin-verbal cmmunication, he has precocious language which appears well-developed but uses less communication for joint social purposes that would be expected given strength of language acquisition.

So basically I am asking: is this what used to be called Aspergers? Or autism?

Sorry this is so long.
I will probably post an emotional falling apart post later when i have time and wine to hand but right now I am in coping mode which for me is analyze and comprehend data, gather info, get hard facts and read. There it is in black and white and my response is: what the fuck does it actually MEAN?

Thanks, a million.

Mummytomog, that's so interesting (and must be very annoying). I really want to write longer reply but DS didn't nap yesterday and DH at work so not been able to! Will try later today (it's 7am here).

MummytoMog Sun 24-Mar-13 10:59:20

No, the apple doesn't fall all that far in our case. I was another early reader,who preferred books to other children and had a lot of difficulty with making friends/understanding social rules. I wouldn't say I had a crap time, but I can see how that tendency to disappear into my own world, plus DH's odd auditory processing has given us DD. We're both quite academic and have families full of scientists and lots of friends who are deffo somewhere on the spectrum, so while we aren't going forward to diagnosis at the moment (because I hate our educational psychologist and was finding the process really hard to deal with) I at least have lots of positive role models for DD's future. It's useful to see things that you might expect, like late potty training, or difficulties with pronouns or understanding social stories, or even just being able to read about other parents experiences and not feel so isolated.

I think one of the things I found hardest was they way that everyone wants to turn things I love about DD into symptoms - her love of numbers, books, singing, rhymes, these all get tuts and 'children like this often do that'. Her habit of repeating phrases, poetry or songs became echolalia, her precocious reading became hyperlexia. Even her perfect pitch is a symptom. Thankfully we've found a lovely private Floortime therapist who doesn't make me feel like shit about my family, my parenting and my child.

So far told sister (she said all the wrong things, bless her) and MIL who has been unexpectedly fab.

Will tell dad when he visits after Easter.
I think telling people is one of the hardest things so far. Hearing them be all sad and worried but DS isn't someone to be sad about; he's lovely and I don't want to be sad about the dx. To wish things differently would be to wish for a different child to the boy we love.

Hyperlexia v interesting; from what little I've read online via fast googling I had it. Was reading by 3, writing letters at 4 to fellow preschoolers (who couldn't read them) , used long words as a toddler and spoke in sentences, recited poems and books by heart etc and had read the entire school library by end of junior school. Escaped into books and dreamland my whole childhood and didn't like or understand playground rules, other dc. Was not a happy or childish child at all. Back in 70s/80s nobody really bothered about it. I was appalling at maths and scolded and punished for it but reading and talking weirdly unlike a normal kid and having no mates was just ignored. I tried very hard to learn the rules and pass as normal.

Don't want DS to have a crap time like me.

DH is mildly dyslexic and like me finds social small talk very difficult.
He is very clever but struggles with 'words jumping on page'. He was very clumsy and lonely as a small boy.
It's fascinating to see how the pieces of the spectrum change like a kaleidoscope and present with each generation.

I don't think the apple fell far, but we never thought about our own childhoods much til we had DS. Suddenly I'm starting to see.
Did you do this? Start looking for family patterns?

Will read up on hyperlexia more, thank you.

MummytoMog Sat 23-Mar-13 16:15:22

Look into hyperlexia some more. There are some interventions/therapies that can be done utilising the precocious language and reading skills. I enjoyed Audra Jensen's book 'when babies read' although I didn't use her method particularly. It was just nice to read about a child like my DD. I don't have the breadth of experience or knowledge that many here do, but one thing that kept coming up for us and our DD was Type III hyperlexia. It's just something we bear in mind, rather than build a treatment plan around though. For what it's worth, we've found DD far more sociable since starting nursery (but she was non-verbal at 2.3, and didn't have useful language until 3 or so and is still very impaired) and since we started using Denver/Floortime methods with her.

coff33pot Sat 23-Mar-13 15:43:46

Tbh my whole family knew due to me fighting with school and medical bods for 14 months lol. I think my continuation confirmed the dx before he actually got it LOL as they know me well enough that if I am on a mission then there is something up grin

Inlaws on the other hand ....well they never phoned me again not even to see how I felt.

Ds1's dx took the form of a 6 week multidisciplinary assessment so everyone knew anyway!

Thank you all again.

Can I ask, how and who and when did you tell people after dx?

It'll take a few days to hit. I always end meetings etc on a high then crash a day or two later. I usually allow myself time as I know it will take a little while to climb back up again.

coff33pot Fri 22-Mar-13 20:40:51

Hi Trucks I am glad the waiting game is over for you smile

I am not experienced or a proff just a mum but from the scores you are showing and what you are telling us issue wise here then yes I would lean towards AS.

DS was similar at your sons age. He had dx of Asperger syndrome moderate last year and that was at 6 yrs old as per DSM IV and ICD 10. Also in the dx notes is confirmation that he has an ASD to cover the fact that AS is disapearing if you see what I mean x

I can't believe I am being so bloody calm about it. I got the dx a few hours ago and am sat here looking at it while DS naps and posting here. Not even had chance to talk to DH apart from 2 minute call as he's at work having nightmare day on deadline. Thank god for this site.

DS now awake...back later.

I do not like living here 12000 miles from everyone I love but I can finally see the point if it means DS can get help he'd not get if we were at home in UK. Silver lining etc.

Damn hard not being able to talk to family and friends though but at least he will have more chances.

Oh sorry you're not UK based, okay that makes more sense. It sounds as if you're with people who know what they're doing (less likely here!)

Yeah we are v v lucky re Denver stuff.
Accessing it will take all our savings and then some but hey.
That's what they're for.

At the moment his main problem is respetitive limited play, on his own, won't play near or with other children. Won't even look at them.

He uses 5-6 word sentences but his speech isn't used to build social relationships or joint social purposes: he is in his own world on his own terms.

moondog Fri 22-Mar-13 20:26:58

Denver Model eh?
You are in good hands.

He saw a clinical psychologist who will share results with similar colleague before final report.

She runs a centre where they do ABA and have recently trained in Denver Model (advised for DS plus SALT).

Results will be shared with his paediatrician who is like his GP (USA system private healthcare: ASD not covered by insurance so all intervention will have to be paid for by us)

Did he see a paed as well? Sorry have missed your threads.

TBH I think in many ways it's very difficult to predict what will happen with a 2 year old because it depends how development continues & quite a lot of that is out of your hands. The important thing is to work on whatever needs work. And it is good he has speech (even if it needs working on) as that gives you something to work with iyswim.

Yes he's two years three months.

Is your son two? (sorry bit confused)

autism.about.com/od/diagnosingautism/f/mildautism.htm

The above has basically confused me even more....

Says a score of 30-36.5 is indicative of mild to moderate autism and scores 37 plus severe autism.

I think his speech and talking is skewing it? Or does the talking plus mild/moderate put him as what used to be Aspergers? And is now not since DSM changes?

Thanks so much Starlight. We scored 31 on CARS 'confirming symptoms of autism across many areas of social behaviour,communication and functional skills in th mild/moderate range'

What was the CARS result?

The research shows that there was no standard way of diagnosing Aspergers. It was down to preference of the dxer. However, very broadly, if language was present before 3, then the dx would have been Aspergers.

Having said that, a dx of ASD is imo better for accessing services and provision.

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