On the waiting list

(3 Posts)
TippetyTapWriter Thu 14-Nov-19 11:00:59

Ds (4.5) is now officially on the waiting list for ADOS, which is about 2 years in our area. Apparently he scored 20 on the parent’s questionnaire and severe on the school’s. I can’t quite remember what the questionnaire was called, SRQ or something I think. Can anyone tell me where 20 sits, ie is it low or high etc? I guess the ‘severe’ result is easier for me to interpret, though still a bit of a surprise!

Is there anything we can do while we wait two years... Private OT? Play therapy? Just feel a bit aimless really. I didn’t think he was doing so bad at school really, but chatted to another mum in same situation and her ds isn’t having the same difficulties ds is at school so maybe things are worse than we think. To me main issues seem to be noise (he wears ear defenders at school for lunch and breaks etc) and emotional regulation- gets distressed easily. He spends a bit of time (about 3 times a day) out of the classroom at the inclusion unit where he can calm down etc.

Sorry this is all coming out a bit rambly. I just wonder if we are doing enough, as it’s just business as usual at home. But at home he’s happy and not ‘difficult’ though not easy either if that makes sense. He’s just who he is! I’ve joined a local SEN Facebook group and we don’t have the same struggles as most, no meltdowns etc so I wonder if we do need to do more or it’s ok to just carry on as we are?

OP’s posts: |
LightTripper Thu 14-Nov-19 14:15:11

I'm afraid we never got a score from any of our questionnaires (actually they really just interviewed us, rather than doing a formal questionnaire - and similarly they went to visit DD and her teachers at nursery, so there was no formal feedback from that - more qualitative in her Dx report).

It's really hard while you're waiting for Dx. We did do stuff but not too much and we were never really sure if they were the right things. We did a lot towards physical confidence, and quite a bit on turn taking/social confidence kind of stuff, and then some on understanding emotions and managing anxiety. Once she started school we just tried to make home as calm as possible. You can do a bit of skills teaching but I don't think it can be too full on as they just need to rest and recover, school is such a big drain!

We're finally doing the NAS Early Bird + course which would have been useful 2.5 years ago when we were first told DD was probably autistic but now ... not so much really!

There are some really good books out there to give you ideas in the mean time though. How to Raise a Happy Autistic Child by Jessie Hewitson is really good, as is Autism and Asperger Syndrome in Childhood by Dr Luke Beardon. Both very positive and particularly Luke Beardon's is very focused on the autistic person's perspective (he has another older book about adults that is on my "to read" list!)

If your son has any issues with communication or social/sensory issues then the Chirp YouTube channel is really good (she's an SLT but also has lots of videos on social stuff, engagement, sensory issues - loads of useful stuff and not horribly negative/ableist like some of the therapy sites are). www.youtube.com/channel/UCfYVQf91yvCwAfZGn1vrypQ

You should also join our thread called something like "Year 1 Auties" - a few of the parents there actually have kids in reception so might well have ideas (and the rest of us can probably just about remember last year - or you might find the older versions of the thread useful, that are linked on the front page).

The Nurturing Neurodiversity YouTube channel and Facebook page is also really nice - lots of parents there are still pre-Dx.

Reading books about emotions can be helpful, and getting DS involved in decisions and problem solving around his emotions. Actually if you look at Chirp's recent review of the "Explosive Child" book that might be useful (it's actually about involving your child in problem solving after the event/not in the heat of emotion - not just for explosive children!)

There are various materials on the web which are similar to the EarlyBird course (e.g. I found this from a quick Google) but I don't know how useful they'd be without the course leader (plus the "Am I being Annoying" page is very annoying grin). Probably the books and videos are a better bet, but this is a good overview of the kind of resources that you will probably be pointed at if you do get a Dx, so probably worth a look!

marshmallowss Thu 14-Nov-19 19:11:01

With our questionnaire we got scores and the teachers was 130 and mine was 150. They told me the cut off point was 130 but they only worry when it's down in 110-115. They've refused to put her on the waiting list for ADOS which is 6 months in our area. Tbh I don't think it is ASD and more ADHD. We had a speech and language assessment and she scored low so we are currently working on her understanding of language and processing information. Could you ask the school if they could do one and what strategies to put in place?

In the mean time, look at PECs cards for visual.
Social stories to help your DS (look at Carol Gray who created them- they are brilliant)
Timers for focus
Sensory breaks (gloop, playdough, bubbles etc)

Obviously the numbers on the questionnaires are very different to yours so I would expect different scores in different places?

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