Autism Diagnosis

[clareykb]

Hello everyone, we are just about to start the ASD assessment process with DD who has just turned 8. It isn't unexpected as there have been signs for years but not really enough for a diagnosis (typical girl presentation from what I have read) other than horrendous wait times which I know lots about as I work in a sort of related field, anyone tell me what to expect or hints from a parents point of view. Extra interested in hearing from anyone from the North East or anyone who has ID twins where one has a diagnosis.. realise that is niche but DD is an ID twin and I think her sister also has some traits but to a lesser extent so they aren't picked up by school.

Hi

I'm replying to your thread because I have a daughter with ASD (diagnosed at nearly 11, now nearly 12) and I am also in the north east.

If I tell you a little about our background perhaps it may help in some way?

2x DD then came along DS. (3 years between DD2 and DS.)
DS diagnosed with ASD at 4 (the process started because of numerous differences, ie. speech delay, no sense of danger, trouble sharing, certain things a certain way etc, etc.)
DD2 then 7, but no concerns.

THEN (just before turning 8...)
DD2 began (progressively) experiencing anxiety big time!
Crying each night that she didn't want to go to school - but unable to say why.
Crying before going out on a weekend - but unable to say why.
Crying before doing regular clubs/activities - but unable to say why.
(We sought help from the GP and Healthy Child Team, but the strategies just didn't help.)

A year or so later (so 9,) continued crying over the above situations, but also began to include walking on tip toes, hand stimming, pacing, jumping, scratching self and nipping self. And combined with social differences (also noticed over time,) at this point I questioned ASD.

FAST FORWARD through further GP appointments (to be referred to the community paediatrician) and then a referral from the paediatrician to the ASD pathway, DD2 was eventually diagnosed by a multi disciplinary team. (Said team consisted of 2x speech and language therapists, a clinical psychologist and a consultant paediatrician.)

A long journey I am afraid and we have jumped through many further hoops in order to continue seeking help with (particularly school based) anxiety, but knowing that my DD has ASD has been a relief for both us, and her.

Feel free to ask any further questions.

Thanks for your reply. DD was born prematurely and has had delayed milestones in most (but not all areas) but especially speech and languge. As does her twin but to a lesser extent. However she is totally happy at school, no real anxiety about most things but she does stim and finds social interaction tricky. She has obssesive interests too but as I hear is comon in girls, they aren't paticularly odd, just very intense (currently Harry Potter and musical theatre)

The thing I find interesting is that acually, her twin does all of these things to a much lesser extent but is actually more anxious about things like school and new places but no one at school seems even slightly concerned about her!

I am not being negative towards schools, but teachers, TAs, SENCOs etc are not professionals trained to diagnose ASD. I would say that if you yourself have concerns about DD2, then raise it with the professionals involved in DD1's care.

Are you literally about to start the assessment, or have you just been referred to the pathway/route to assessment?

If it is the latter...
My personal advice would be to ring and confirm that the pathway team have received all the necessary paperwork and that your DD is definitely now on the waiting list (as you don't want to get months down the line to find there has been an admin error.)
Keep all of the paperwork you have/further receive, about DD, in a file.
Write a timeline of concerns about DD, from birth and jot down specific examples, adding to the timeline as you wait for assessment. (This should be helpful when you are interviewed as a parent/parents.)
Don't be afraid to ring the pathway team and ask about waiting times etc - they are very nice and understanding.

If it is the former, three things will happen in order for the team to assess...
Your DD will either be observed in school or the team will talk to school.
You will be interviewed as a parent/parents.
Your DD will take part in an ADOS (Autism Diagnostic Observation Schedule.) This is a structured assessment with one or two members of the team (that will really only feel like play to DD) and allows scoring of autistic traits/features (if you see what I mean.)
The above can happen in any order and may be on different days (weeks even,) but then the team will come together to talk through results and whether the threshold for diagnosis is met or not. The team will then contact you at some point after.

Any further questions - fire away.