My seven year old DD

[PseudoBadger]

DD has been 'challenging' since about 3 years old, she is now 7. She is perfectly behaved at school (although it's sometimes difficult to get her dressed!) but doesn't always like to mix with others.

As our bedtimes have got worse, and screaming rages have increased, I decided to write down everything, and mentioned her behaviour to a senco friend. She has suggested possible ASD and PDA, and I have made a GP appointment.

I guess I would find it useful to get opinions on whether she actually is out of step with other 7 year olds. Her older brother has dyslexia.
Here are my observations (sorry it's so long)

Grinding teeth when awake
Occasionally flapping which she says she enjoys.
Tiptoe walking in house
Finds it difficult (impossible?) to settle to sleep
Hates labels, seams and embroidery on clothes
Wears her Velcro shoes very loose
Only one set of pants and socks are acceptable
Dresses inappropriately for weather (no coat, short socks with skirt etc)
Pretends to be a cat. Miaows instead of talking, hisses when angry, acting out things as cat. Licking people (family!). Can spend all day as a cat, like today.
Has a very untidy room and will not tidy. If asked to she will scream, cry, hit herself, say "you don't love me." And that she is "Stupid stupid"
She can cry and scream for a long time if things not going her way
She Interrupts me if I am busy, for example on a work call, even if being asked to wait
She won't get dressed when asked, even if for something she enjoys eg riding, football. Or for school!
Hates brushing her teeth and hair, and washing hair.
Lots of mood swings, is unpredictable.
Gets obsessed for example with Harry Potter
Focussed on me to the exclusion of her dad. Will cuddle me all day, sit on me, obsess about where I am. Say things like "You must always tell me where you are"
No real close friends but does have friends.
No issues at school (except wearing correct/appropriate clothes and eats limited pack lunch only)
Always hungry at home
She often removes herself from group situations to play alone.

It sounds challenging for you all, do you have much support? Writing things down is a good idea.

The PDA society website is very good and might be worth a read to see if any of it resonates. The National Autism Society website is also a very good resource for information. Sounds like it might also be worth having a look at sensory issues.

Hope that helps.

www.pdasociety.org.uk

www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?v=201507131117 (information about sensory processing)

www.autism.org.uk/advice-and-guidance

Hi

Your daughter sounds alot like my DD, so many similar things on your list!

You are right to visit your GP. Hopefully they will refer to a paediatrician.

X

Thank you both. It's weird thinking about this as for so long it's just 'the way she is' and there's a slow realisation that actually for her benefit let alone ours we need to get some help. But it all seems a bit real and daunting now. GP booked for the 11th and I will email the school this week.

Keep us updated and in the meantime ask any questions you need to, of the forum, or directly.

👍

Have just seen this thread again and saw your appointment is tomorrow - hope it goes well :)

Yes, hope all goes well!

Thank you!

Update - spoke to GP who has referred to CAHMS (with the huge waiting list obvs).
I also had an email conversation with her teacher who took it completely seriously and make a few observations of her own. She has asked that I 'meet' with the senco, who has just called and left a voicemail to say that she would like to get an EP involved. So I will speak to her tomorrow morning.
I feel really bad, like I am exposing all of my lovely daughter's worst qualities to the light of day. I know it's for the best.

The referral to CAMHS and what the SENCO said - all positive.

Purely based on our own family experience though...
Do CAMHS in your area assess for ASD?
They don't in our area and after about three appointments (so spent time on their waiting list and time between appointments,) they then advised a referral to the community paediatrician (who would refer to the ASD pathway.) It was then back off to the doctor's to ask to see the paediatrician.

Please don't feel guilty - you are trying to help your DD!
(In all honesty I very discreetly filmed my DD in full on meltdown, and stimming to regulate. My DD is totally unaware and I felt bad for it, but I felt like when I was talking to school/professionals they must think I was bonkers, as my DD was also masking.)
I say 'was' masking, as now that she is fully aware of her diagnosis, her mask outside the house does slip every now and again.

Well done for discussing your concerns.

I'm not sure if they do assess for ASD, how would I find out?

You should just be able to ring the number (which though you won't have yet) it should be accessible on the web.

Just explain the situation and ask if there were any suspicions that DD had ASD, would the service be able to actually assess for ASD? Or would that be a different referral?
Whatever the answer, 100 percent keep the appointment but if they say no, it might be worth asking them (if there were suspicions) what the next step would be, ie would CAMHS refer on or would that be up to the parent?

Asking a few questions will do no harm. I would just hate for anybody to have to go back round the houses like we did.

X

Thank you

Another update - I have spoken to the senco and she is going to re-refer to SALT (DD was discharged from there a couple of years ago) and also do some other things I cannot remember but sounded appropriate. I need to start writing things down (I was in a field ). I was then surprised to get a call from cahms doing their triage (only 2 days after GP referral) so had a good chat with them and am now in the 13 week waiting list for further action. They will also link up with the school.

you've just described my DD, with the exception of being fine at school and the licking. I got hissed at this morning when I tried to get he rout of the bath, always a difficult task as she hates baths and showers. She is 6 and diagnosed with ASD at 3, I strongly suspect PDA and am looking at how to get this diagnosed or recognised somehow.

It was SALT who suspected ASD and then referred us to a pediatrician who went on to assess and eventually diagnose. SALT are very used to working with ASD and are often the ones to spot signs and refer.

If you google 'Stephs two girls' you'll find a great blog about PDA and autism in girls.

Best of luck with the journey towards a potential diagnosis.

Your dd sounds very much like my 11year old who has exactly that diagnosis, asd with pda, in my area cahms did not diagnose we had to go through the paediatrics team with a 15 month wait.
She was an expert masker at school until it got to the point where she couldn't take it anymore and she was getting excluded at least twice a week even on a reduced timetable, the right setting is vital which we could only get with the diagnosis, she now wants to go to school and is getting excited about it again.

The ep referral is a good idea, we had many appointments with one and it helped me understand abit of how my dd was feeling about herself.
We also had a play therapist come into school one afternoon a week and she loved this.

@LittleSwede

you've just described my DD, with the exception of being fine at school and the licking. I got hissed at this morning when I tried to get he rout of the bath, always a difficult task as she hates baths and showers. She is 6 and diagnosed with ASD at 3, I strongly suspect PDA and am looking at how to get this diagnosed or recognised somehow.

It was SALT who suspected ASD and then referred us to a pediatrician who went on to assess and eventually diagnose. SALT are very used to working with ASD and are often the ones to spot signs and refer.

If you google 'Stephs two girls' you'll find a great blog about PDA and autism in girls.

Best of luck with the journey towards a potential diagnosis.

With ours the PDA was put as a part of her asd as they didn't like using it as a standalone diagnosis, but its definitely there, if she so much as sniffs a demand in anything she's got to do you have no chance whatsoever of it happening.

Thank you @LittleSwede and @Fairymad.
I am meeting the senco tomorrow, she was talking about plans to support DD at school. This has taken me aback a bit, as they seem much more concerned than I anticipated at this stage! Will see what she says.
DP is really against me doing all this. He thinks she's "just difficult". I hope he can get on board.
DD has actually been pretty good this week (I felt like a bit of a fraud when the senco rang me!?), but there have been issues every day. Bedtimes are a massive issue and she has to be in complete control. I took the dog out this evening and she needed to know exactly where i was going, for how long etc. I feel like I need to get her permission to leave the house most days.

Met the Senco today. She is starting off some classroom support strategies for DD on social and communication issues. We had a really good conversation about all of DD's behaviours and she thanked me for writing such a detailed email about my concerns.
She is already talking about an EHCP application which has surprised me.
At bedtime we used one of the strategies (social stories) which DD seemed to enjoy.
Feeling daunted and positive tonight!

Getting ehcp in place as quickly as you can is a good idea, it will get things set in place for your dd.

Just to say so much of your list is my DS! Hadn't thought of 'always hungry' but I am writing that down.

He does not stop looking or asking for food at home but won't really eat at school (hates the environment/smells).

He's also ARFID...

Thanks @SerialGoogler. I send her every day with buttered bread, strawberries, occasionally pepper and a fruit string. I tried her on school lunches in year one and after 2 days the teacher pulled me aside at the end of the day and said DD had asked to go to the toilet at the start of lunch and never went back in to eat. We thought 'what a funny little thing she is' and put her back on packed lunches.... Obviously with hindsight....

DS flatly refused school lunch so I send him in with a packed one, Invariably he'll eat a bag of crisps and get out fast!

DD couldn't get comfy in bed last night (well I couldn't sleep with 100 books, pens, bits of paper etc in my bed either) so she slept on her desk...

Major issues today when nicely asked to tidy her room. She chose a reward, and the length of time/days she would give herself. She then spent the whole day panicky breathing, crying, moaning that she couldn't do it, she didn't know how, but that she really wanted her reward. This then just continued in a circle of despair. I offered to write steps down of how to tidy draw a social story which she liked last time, but to no avail. She has done a tiny bit. However I have been mindful of strategies and haven't shouted or got upset with her which has helped me anyway, even if not her!