First time on here so good evening to all.
My daughter is 8 years old. Having worked in special needs for over 10 years, I am confident enough to say that she does not present with significant traits of ASD. However behaviour over the years that myself and wife have been aware of have been presenting more and more in recent months. I read more frequently that ASD in girls presents much more subtlely and we're not sure if we have genuine concerns or are neurotic parents.
As my little girl is making progress at school, class teacher is not overly concerned. My daughter does access a weekly sensory bus as she finds it useful to self soothe and re-regulate. During parents evening I asked if they had concerns over ASD and they did not. Anxiety is a huge problem at the moment. A school production has sent her anxiety through the roof. Every morning has been a battle and whilst we want to encourage her to take part, the visible signs are going beyond normal. Sleeping is huge issue at the moment. It's almost 11pm and she is still calling down from her bedroom. It seems that physical touch/contact from us is the only method of soothing her.
Any changes to her daily routine cause distress. Whilst she can cope at school behaviour wise, she's vey keen to follow the rules, when she returns home from school we see a very different picture. She frequently goes into meltdowns and similar to a lot of ASD children, she bottles up emotions in the day but once the top is off, we see an eruption.
She has been motivated at school to achieve success through a points system. However she has achieved all available to her and she s very confused as to why this cannot continue. We have tried to explain but her rigidity in thinking cannot compute what we saying. She is often vacant at home. She frequently spins and asking her why, she says it relaxes her. She will watch TV stood on her head as it is comfy.
She struggles with friendships and emotions. Children will ask her to play but she does not know how to respond and appears rude.
She obsesses with interests for months on end until complete over saturation.
You have essentially just described my daughter - I relate to each point in each paragraph. We are both on the autistic spectrum.
Let us know how you get on with the referral.
Also, if you put in place things at home that she has at school (like a good routine), this will probably help. And have a points system at home - my daughter devised her own and sticks to it, even designing the paperwork herself! You already know what helps her - routine, sensory work, points systems, rules, the need for things to 'compute', and watching TV on her head. Support her in all these things - she's not doing them to be a nuisance, she does them because this is how she needs things to be so that she can 'function' correctly. Just like some people need to recline on a sofa to relax, her method of achieving the same is to stand on her head. And that's okay, it's okay to be different. Just support her with the things she needs.
This is where I am with my 10 yr old year 6 daughter. It’s only in recent months that the gap between her and her peers is widening socially and that she has voiced feelings that she is different. I work in SEN myself as a teacher and I’m finding that all my training and rational thinking goes out the window when it comes to my own child!
My question is do I watch and wait? Do I flag it with the GP so that it’s there on her notes should the differences become more pronounced at secondary school? Do I go for a private assessment? Am I imagining it? Am I losing the plot!!!
School holidays have been lovely in the sense that we’ve had NO meltdowns, and she has been able to take her toy cat (yes, animals and Lego and fantasy fiction!) everywhere. Haircut and shoe fitting were a challenge and didn’t get all the eye test done as she got upset by the bright light...
Have raised with SENCO and she has some in school coaching coming up plus the usual tick box forms to fill in. Advice on next steps appreciated
I'd recommend raising with your GP as soon as you can, so you can get her 'into the system' as soon as you can. It can take a few months before she gets seen by the professionals, and it would be better to get her diagnosed earlier so that actions can be put in place to make secondary school more suitable for her. The other option is to wait until you're having lots of issues at school that result in meltdowns and days off.
You could also speak ahead of time to her secondary school, to see how they can help. It might depend on the school but if your child was struggling, and you tell the Pastoral care team at her new school that she displays autistic behaviours, they should be able to accommodate her needs without an official diagnosis.
I would say with autism, prevention of issues is far far easier than the resulting upsets after the fact, and since it can take a while for these things to go through the system, you'd be best getting started as early as possible.
My advice also would be to gather evidence as it can sometimes be a bit of a battle with the people who grant the diagnosis. Particularly useful is evidence of how it affects her studies and her friendships - when we went to see them, despite me giving them a 6-page written report of evidence of why I think my daughter has autism, the child psychologists said there was no action to be taken at this time because we happened to go see them in the 6-week summer holidays and so she had no particular issues at that point in time. Imagine that, no issues during the time she spends away from other children on her own and with her family at home for weeks on end.
It's not mandatory to get a diagnosis, it can sometimes come down to personal choice as to whether you want to get one or not. The main points to consider are: how will it help her? How does she feel about it, and can you get by without one? What difference will it make to her life getting one? Some people feel they don't need one, so don't go for one. It depends on her needs. My personal recommendation is to get one, then you have it if you need it - it will give you access to services when you need them, and this can be useful in school and in employment, if you need any changes to the job or environment so that you can work more effectively. And you don't have to disclose to anyone that you have it, the only place it is listed is your medical history; you're under no legal obligation to disclose the fact to your friends, family, workplace, police - no-one at all. As long as she understands that just because she has this label, it doesn't mean it defines her, she's still her own person with her own personality, all it means is that it's recognised she will struggle with some things and might need help with them...which to be honest is true of everyone, so the only difference it makes is that she can officially ask for help rather than hope her employer honours it instead.
My son had his first assessment with CAMHS last week and we had the same issue - after 1.5 weeks of not seeing anyone but us he was a lot more settled than during term-time. He started high school this year and we've been lucky that the social inclusion unit has supported him despite him not having a diagnosis - CAMHS have now referred him on to the autism team so we shall see what happens. It was sad to hear my son, when asked by the psychologist if there was anything that worried him about the possibility of an autism diagnosis, say "I won't be able to get a job". I have no idea where that's come from. I just wanted to thank you for that last paragraph, which felt very helpful. We're trying to get an assessment for my 17-year old and can't even get a GP appointment to start the process - they're all phone appointments which are no use at all for him!
I Googled to find out which provider supplies the Autism support in my county, e-mailed them and they said I had to get my GP to fill in a form from the provider's website which detailed why my GP thinks I have autism, then my GP signs it and sends it off for me as a referral.
My GP knew nothing about autism. So, I completed the form myself, wrote another 6 pages categorised into sections and lists of evidence. The conversation with my GP then went "Hi, I think I have autism, I've already filled in the report, I just need you to sign it and send off the referral". They were much more willing to do that than try to understand autism themselves and decide whether they think I should be referred or not. See if you can find out the correct process for your county, then when you 'phone up for an appointment with your GP, you can just say "I think my son has autism, I've already completed the referral form, I just need the GP to check it, sign it then send it off as a referral".
Since it's not your GP who will do any of the diagnosis - their job is literally just to do the referral to the specialists - you can make it easy for them by just doing the work yourself. The only involvement your GP has is to make the initial referral, and then mark it on your medical history once you get your diagnosis.
Thank you! It sounds like you were amazingly thorough and I bet your GP was very grateful. Can't find any info for our area online but I know that it goes via CAMHS and I've now seen the forms that I had to do for my youngest (which I stupidly didn't copy so no longer have) so have a good idea of what needs to go on there. I've managed to book an appt for 8 May so we've plenty of time to compile our evidence before then!