To ask for help for my family?

[Helendee]

I love my family more than anything in the world but I am becoming increasingly concerned about the behaviour of my almost six year old granddaughter and the effect it’s having on the rest of the family.
She is a twin and since the age of 18 months of so she has shown signs of aggression towards other children except for her sister and cousins.
We are pretty sure that she has ASD to a certain degree having done much research but my daughter doesn’t know which way to turn as teachers say that DGD is mostly fine at school.
My poor DD is a childminder and has to keep E away from other children because she gets so distressed.
Does anyone know how we access any help available?
Thank you.

If the school aren’t concerned then you can go via the GP. I assume there are other concerns than solely the aggression?

Could you afford a private assessment? It's very common fir girls to successfully hold it in during the day and mimic their peers enough to get by and hide their problems.

If you can't get a private assessment I would keep pressuring the school and GP to pursue a diagnosis.

Even without a diagnosis it may be useful to read up about strategies to help girls with asd. Perhaps join a forum and ask for advice.

Good luck op you sound like a wonderful grandma.

Nanny0gg

Thank you, yes there are a myriad of issues concerning sensory and social problems.
E was born with talipes in both feet (club feet) and I do wonder if there is any correlation going on.

Home....

Thank you so much, yes I will happily pay for assessments for her, would you know how I could go about arranging one? X

E was born with talipes in both feet (club feet) and I do wonder if there is any correlation going on.

Between club feet and autism? Between club feet and aggression and autism?

Do you know much about autism? I'd invest in a couple of books before moving onto private medical fees, TBH.

RubberTreePlant

With due respect I obviously know little or I wouldn’t be posting for help.
As the spectrum is so wide I don’t think a book will provide answers. We have already done extensive research into Aspergers in girls and my little granddaughter ticks many of the boxes.
There is no definite yes/no as to whether talipes can be part of a wider syndrome currently.

It's just that your apparent conflation of aggression with autism seemed a little bit 'off'.

There's been quite a lot of trolling on the boards along those kind of lines, so one naturally comes to be wary.

But surely aggression is common with autism in some cases?

Autism is a huge spectrum as ypi have said aggression can be part of that. I'd get your dd to write down a list of all her concerns: social, emotional, aggression, sensory. Take this to gp and ask for a referral for autism assessment.

Thank you Waveysnail, that’s just what I will do. X

Aggression, frustration, physical anomalies as part of a wider syndrome, I think we all understand the OPs query and request for help. No need to dismiss or sneer at her.

OP, I think the GP is a good next step. I don’t know much about autism or club feet and associated issues. But I do know that lots of families spend lots of time trying to figure out what condition their child may have and subsequently how to support that child in the correct context. So just keep going with reaching out to the school, the GP and any resources you can get the ear of.

Theres some great books out there. Plus some things you could try at home for dgd. It can be hit and miss with what works. Visual timetables, creating a quiet space she can retreat too when shes feeling annoyed, working with her to recognise when shes feeling cross and to learn to remove herself before she becomes overwhelmed. If her mum.is minding other children dgd may feel totally overloaded after a day at school as she has no quiet time and space to regroup

I would check with your local authority as to if a private assessment for ASD would be recognised as an official diagnosis.
We looked into it with our DS but was advised that it needed to be an nhs diagnosis to be recognised by his school and for him to be able to access any additional services/help.
When we started having concerns we spoke to a health visitor and they started the ball rolling.

Sometimes the school don't see the full range of a childs behaviour. Autistic kids like the very structured day at school and manage to cope. But when they get home they then have outbursts. I would suggest filming her so you can show the SENCO at school. Does she have hypermobility?That may be linked to the Talipes. My son is hypermobile and it's quite common in children with autism. Occupational therapy diagnosed my son's hypermobility. It could be that the aggression is her struggling to cope with sensory overload. Maybe she needs space and quiet activities away from the other children, she might find it too overwhelming. Occupational therapy sent me to a workshop where they looked at sensory issues which was really good. Definitely speak to the GP and say you want her referred to a paediatrician. Also the senco at school and try to get the school to organise an assessment from an educational psychologist.

I hope for you all that you get the help needed. Having been down senco route many years ago ( there was not much back then)
Start with your gp, book a double appointment. Ask the school for a referral , some can be reluctant and delay this but insist.
Wishing you well.

I would check with your local authority as to if a private assessment for ASD would be recognised as an official diagnosis.

A diagnosis is a diagnosis as long as it is made by a professional who is qualified to do so.

LA and school staff will tell parents that they won't accept a private diagnosis/report to stop parent getting the evidence they need to ensure the child's needs are met.

I reality, a privately commissioned report is usually a lot more worthwhile than an LA commissioned one. The independent clinician will make judgements and recommendations that are in the best interests of the child, not just those they are permitted by the LA to record.

If the child needs an ENC Plan and the LA refuses because the reports are independent, you just appeal to the SEND tribunal who absolutely do accept reports. LAs often back down as soon as the appeal is lodged.

Don't know if you've seen this OP?www.autism.org.uk/about/diagnosis/children.aspx

NHS diagnosis waiting lists are 18 months to 2 years in many areas. You need to make a case and see the GP with your evidence in order to obtain a referral for an NHS diagnosis. It's worthwhile getting into the system and on the list as well as pursuing a private diagnosis. IF the private diagnosis is recognised, you can drop off the list, if it's not, you should be able to obtain some help from school whilst you're waiting.

It's a horrible system, we all know interventions at school should be based on individual needs, there should be no requirement for anything else, but in practise a diagnosis can make some schools provide services they would not do without one. Some schools are great at providing interventions, some are just rubbish.

Re private diagnosis, SOME professionals who diagnose privately also work for the NHS part-time or are recognised by the NHS.
That includes the Lorna Wing Centre and Daphne Keen.

Other private diagnosis available here you will have to ask if they will be recognised by the LA/NHS. www.autism.org.uk/directory/browse/cid=80~aid=1.aspx

Are you sure you're not mistaking aggression for overwhelm - that your DGD cannot cope with a situation therefore lashes out as a defence mechanism? Aggression is NOT a marker for autism, sensory overload and a reaction to that can often be fight or flight, often observed as meltdown or shutdown.

It's common for a child with ASD to hold it together in school (it's called Masking) so school "see nothing" then the child either melts down or shuts down on leaving school, on the way home, at home etc.

Try MN's boards SNChat or SNChildren.

In short, do not listen to anyone like a GP or SENCO or teacher who says your DGD does not have autism because e..g. they make eye contact, they have empathy and all the usual 'can't be autistic because' myths. Those people are not qualified to make that decision. Make lists of how your DGD's behaviour is different to her peers particularly in communication and sensory overload, see the GP for referral and book a private diagnosis as well.

NAS clicky link re diagnosis
www.autism.org.uk/about/diagnosis/children.aspx

I have 2 children who have ASD. My DD1 had concerns written into her health record book from the age of 16 months by our (excellent) health visitor. After many, many struggles she finally received her diagnosis when she was 8 years old.
My son has Aspergers and he wasn't diagnosed until he was 11.
They both present very differently. And they both are very different children at school to how they are at home.
One of the reasons the Autism diagnosis team (finally) took me seriously was because, after seeking help for DD1 compulsive overeating, a blood test revealed a genetic abnormality. Could this be what you mean by the talipes and possible ASD being linked?

Thank you so much everyone for all of your kindness and taking the time to advise me.
It does feel over-whelming but my DD and I will get together and make a start.
Bless you all.

I agree with PP that you (or your DD) may need to be very assertive in pursuing a diagnosis and getting proper interventions put in place.

I also second the fact that you sound like a wonderful, supportive grandparent. My friend has a child with social, emotional difficulties and she'd love the support of a mum like you. Her mum is very critical of her DS and it means family visits are stressful for her. You sound lovely.