Fed up of being fobbed off by HV

[cooperbug]

My little girl will be 4 in August, my HV last seen her for her 9 month development check which was fine. The 2 year check was done by a nursery nurse and I discussed some concerns I had re hand flapping and was advised the health visitor would be in touch to discuss further re possible autism.

My little girl is fairly social and will play with other children and talk to other adults (a little shy at times). She has no problem with verbal/communication skills and good eye contact.

However she flaps her hands when over-stimulated/excited, plays with her brother's cars to make car parks frequently and most recently just started to make a clicking sound with her tongue.

Her nursery have concerns re the flapping behaviour and obsession with cars. Had a joint virtual meeting with staff there and the HV and back in early Feb and the plan was for the HV to come and visit at home (still waiting!) Basically this meeting concluded that they weren't that concerned snd we we would just watch and wait.

The HV finally returned my calls today and basically asked what is it I am concerned about (which is obviously Autism) and that she still didn't think she met the threshold to refer in view of her satisfactory speech and social skills. I asked if she could come out and see her at home as we had planned and she reluctantly agreed but went on to tell me how busy her diary was at the moment!

I have had telephone contact with the GP re my concerns and they also feel that her flapping behaviour is not concerning.

I just want to be listened to and given some support and for somebody just to actually see her! Just have a gut feeling that there is something and they are putting it down to my anxiety. She is due to start reception in September as has August birthday and I feel worried.

Sorry for the rant!

Whilst I would agree that those two things alone aren't cause for concern (I'm an SEN teacher ) I don't know your daughter so I wouldn't want to say, and a parents intuition obviously counts for a lot.

It is, unfortunately, no tragically I think , a massive struggle from the get go for parents to be listened to and heard. By the time children reach my class in a specialist school, I know that their parents will have had to fight like hell to be heard and helped. And it shouldn't be like that.

So if you really are concerned unfortunately my advice has to just keep fighting to be listened to, ask to see a different GP / HV... Whatever it takes. It is awful but it is the way is sadly very often is.
I'm sorry OP, you should be listened to, you're her parent, but I know that whilst it's not a road I've travelled as a parent, from supporting parents in my job... It's a tough one. Keep going, you know your LO best.

@YarnOver thank you for your comments. It’s just exhausting isn’t it but I will make sure I keep fighting to meet her needs autism or not!

So is hand flapping common in no ASD children too? I have not seen it before.

[quote cooperbug]@YarnOver thank you for your comments. It’s just exhausting isn’t it but I will make sure I keep fighting to meet her needs autism or not!

So is hand flapping common in no ASD children too? I have not seen it before.[/quote]
I've taught send for 15 years and I've only seen a handful of kids with asd who flap. The vast majority of children I've taught with asd don't flap. It's a stereotype to be honest. Stimming is something people of all ages with ASD do tend to do, but each individual has their own stim and it's individual and unique to that person.
I have also seen children without ASD flap their hands. Probably about the same number as children with ASD who flap!

Hey OP, if this helps in any way my 19mo flaps hands all the time, and he is completely normal in any and all other ways (points, is sociable and cuddly and sweet happy non-problematic baby). Both parents ASD and no flapping when they were kids. (as far as we know).

I tend to agree with your HV (and I don't do that very often). Autism is not a "hand flapping" disorder, and some hand flapping together with obsessing over cars is not even close to someone having autism - some stimming is common among young children and even adults. Autism is a social communication disorder, so for a HV or GP to take you more seriously you might need to document examples of significant deficits in this area that are impacting negatively on her daily life, though with girls it tends to be a little more difficult
than with boys due to the more sophisticated masking at this age (the clearest signs of autism tend to be before 2.5Y).

My 3YO hand flaps sometimes when she's excited or upset. I'm not worried. Like pp said it's something lots of toddlers do. I suppose the question is what are you hoping to gain if she IS dx with ASD? It sounds like she's doing fab at nursery? There's no cure as such for ASD so is there really any need to get that label if she's thriving and doesn't need any additional support? Especially when she's so young and brain still developing fast. I would just let her be for now and revisit if she struggles at school and you still have concerns. X

Both hand flapping (or other similar behaviour) and having a keen interest in something are very typical behaviours of this age group so I can see where your HV is coming from.

That said, you obviously know your child best and the HV should at least come out and see her. I think she is unlikely to make a referral though if your child's only symptoms are hand flapping when excited and liking cars.

Have you filmed your Dd's hand flapping/other concerning behaviours so you have something to show the HV/GP?

Hi OP, it is so frustrating trying to be heard as a parent with concerns, I know from experience.

If you think there is something "different " about your DD, I would say keep pushing and asking until you get an answer that sits right with your gut.

I say this as a mum to two autistic children. I had a strong feeling about my first that something was different about him. I had no clue whatsoever it could be autism, because back then I had no reference for what "high functioning " autism can look like. I just knew I was desperate for someone to really listen and really look at him. He was under speech therapy from age two due to a speech delay, and still it took another 3 years of pushing after that, trying to find answers, until a new speech therapist he was working with said it looked like autism and referred him for assessment. They diagnosed him immediately.

Then with my DD, we at first were convinced she was neurotypical , she had lots of language very early and seemed very confident. However at age two we began to be concerned by how different her behaviour was in public to private, and the intensity of her outbursts and distress in private nearly finished us off. She was diagnosed at age 3.

A pp asked what you would hope to get from a diagnosis of autism, if she is autistic. My answer is, you would get more understanding for her, which is the best possible thing to give an autistic person. It's really not easy growing up perceiving the world differently to most others around you. My DD expresses very high levels of distress at home in private, but tries to keep it all buttoned up at nursery. It's heart breaking to see how fragile she is at her core and how hard she is working to copy her peers. If I had not fought for her to be assessed, nursery staff would not understand why she needs extra support with certain things, and without that support the distress she discharges once home would be even higher.

I cannot possibly know if your daughter is autistic or not, but I encourage you to follow your gut and keep asking for help until you reach an answer that sits right with your gut. Hand flapping is also common in other neurodiversities eg dyspraxia and ADD or ADHD. Being fixated to an extreme that is out of synch with peers (eg the car obsession) could point to rigid thinking and repetitive behaviour (autism), however it's difficult as parents I think to judge how out of synch our kids are with peers, as we're too closely involved.

Last thought is - do you definitely want your DD to start reception in Sep? If she is August born you now have the right by law to request she defers a year and begins Reception (not Y1) the following year. Ask your LA admissions team for info. I wish I had done this for my DS, as it would have made the world of difference for him. I listened to other people nay-saying the idea of holding him back, when I could have chosen the braver route of listening to my gut.

Good luck Op!