ASD how do you get the ball rolling?

[PinotAndPlaydough]

For a long time I have been aware that my daughter is different and I now suspect that she has high functioning autism, however she’s always been advanced academically and I suspect is very good at masking things at school.
I’ve spoken to her class teacher at the beginning of the year who dismissed it but things are getting worse.

She’s now struggling socially and emotionally, she is very unhappy and is not enjoying school.
I feel like I have two choices now, I either go back to the school and ask to speak to the senco or I wait until August and speak to the paediatric she’s under and due to see then (she was referred for constant stomach pains which I think were actually caused by stress and anxiety. They have confirmed, as I thought they would, that there are no physical causes).

I just don’t know what to say, it seems almost brazen to walk into the school or a drs office and say I suspect my daughter might be autistic when I have no medical expertise. High functioning Autism runs in my family and I’ve worked in special needs schools in the past and my husband is a specialist youth worker supporting autistic children but other than I have nothing to base my concerns on apart from google!

I am worried that I’ll be viewed as neurotic or something. I’m scared the school won’t see the things that I do because she hides it.
I’m just scared in general that if I seek help and it’s confirmed that the label could do more harm than good (what her teacher hinted at) and that if I don’t seek help I’ll be failing her in other ways. I’m just scared and I don’t know how to bring this up to professionals.

In my experience if she's not struggling at school, the school won't do anything. You can go to a gp with a list of your concerns and get asd assessment that way - waiting lists are usually long

Are you in the UK?

How old is your dd?

High functioning Autism runs in my family and I’ve worked in special needs schools in the past and my husband is a specialist youth worker supporting autistic children

This is a good enough reason to go to your GP and ask him to copy in your paed. Autism is believed to be hereditary and autism presents differently in girls.

Have you done any online tests, MChat-R for littlies, if she's way over age for that, have a think back in time and try to fill it in yourself anyway, for your own understanding of things she did when she was young. One part of the diagnostics (depends which ones you have) which you may or may not be given is questions about the person aged 4.

Find an online AQ test for teens and over. Read as much as you can about presentation of autism in girls and women.

I’m just scared in general that if I seek help and it’s confirmed that the label could do more harm than good (what her teacher hinted at)

It's not a label, it's a medical diagnosis like any other medical condition. Would the teacher dissuade you from seeking a diagnosis of any other medical condition?
Perhaps you'd like to enlighten the teacher, suggest she's sent on a disability awareness course, one that has emphasis on hidden disabilities.
Teachers in general know nothing about presentations of SN.

Your daughter will either have autism or she will not. A diagnosis after comprehensive assessment by medical professionals will open the door to school having to spend some money put some support into place for her and possibly exam concessions etc. Support in FE and later work.

How is she emotionally? Many kids who have SN are very emotionally immature, rough guide is about two thirds of their physical age which contributes greatly to their vulnerability. This also needs to be taken into account by yourselves and school.

The gold standard for assessment is the Lorna Wing Centre, it's expensive but although it's private, it has credence with the NHS.
Some local authorities don't accept private diagnoses, they insist on NHS but that can take around 2 years depending on whereabouts you live.

Get the ball rolling as soon as you possibly can.

Thanks for the reply’s, she’s 6 and yes we are in the uk. I haven’t done online tests yet because I didn’t know which were legitimate and which were just stupid quizzes.

Emotionally she’s a bit of a mess to be honest, she has times of very low moods and anxiety which manifests itself in huge meltdowns and aggression. When she’s in a good mood there lots of silly behaviour like jumping around in shops, being very loud, crawling around on the floor and waving her arms and legs around. When she’s worried or upset she repeats herself a lot and will say silly words or phrases repeatedly or will refuse to talk or engage with me. This is only ever at home though, never at school. Some days I pick her up and you can almost sense that a melt down is coming, her anger is often aimed at her little sister or myself.

Some of her physical behaviour could be sensory seeking, you need a paediatric Sensory Occupational Therapist to do a full Sensory Profile for her.

Anxiety level is the key, the more you can crank the anxiety down, the easier things will be for her. Simple structure to her home life is good, any 'do as you please for a few hours' can put some autistic kids into a tailspin.

Sounds as though she's masking at school, very common in girls they are so often overlooked because of it.

I'll stick my head above the parapet and say it's not anger, it's overwhelm, she's communicating to you the only way she knows how that she's been holding it together all day and literally is so overloaded with sights sounds smells touches tastes etc. that her system is overflowing with it all by the time you pick her up and she can't deal with any more. Can you find a nice quiet space where she can chill when she gets in.

Remember not to bombard her with questions about school or her day or anything until she's had time herself to process all of that overload. That may lessen the meltdowns, but she's very young as yet and won't be able to really understand what's happening to her, all she'll know is that everything is too much and she wants it all to go away but she can't make that happen, hence the frustration and what you have been perceiving as anger.

Different kids respond to different strategies for lessening meltdowns. Again, a sensory OT can help with that. You can self-refer in some areas.

Explain her behaviour to your GP. Outline all of her behaviour which is different to her peers and ask for a multi disciplinary team assessment.

You have to push, a lot. You have to learn to take knock backs which then make you try twice as hard. You have to be her advocate.

The NHS route is a long slow one, 18 months to 2 years is common and some professionals still urge you to wait and see after all that time.
If you go private, make sure the people you see also do the same diagnostics for the NHS for one or more days per week.

Thanks for the advice, I do feel awful for her as I’m a nanny and have my charges with me after school so she doesn’t really get a break. Luckily that’s changing in September but I’m going to make an effort for her to have some quiet time after school.

I feel really nervous about approaching professionals for some reason, I’m scared they will say it’s my parenting or not a problem and I’ll have to push them to listen (which I’m not very good at). She has an appointment with her paediatrician in August so I think I’ll ask him to start the process.

Professionals will question your parenting. I've taken the approach of just accepting all the help I can get. If I go on a parenting course and get something useful out of it, then it's a win. I acutally found the Raising Boys course really useful, and the Cyget Autism Course has had good points too. It's a good idea to be ready with what you will say if someone questions your parenting. I usually point out that my parenting did not make my child autistic, but that I am happy to take advice on how to improve my parenting style to suit my children better.

I'm at the very end of the NHS autism diagnostic path for my DS (now 9). We have a working disgnosis of HFA and one more appointment to go before it is "official". It has been frustrating, but once we started to see professionals who work with autistic children, then questioning stopped, as they could all see very clearly and quickly that he is autistic.

One key ting for me was to point out that I have HFA, as do my brothers and parents (and my sister is in the process of having an assessment as a adult). With that kind of family history, they really started to take my concerns seriously. If you have a family history, then say it. And you have plenty of experience with autistic children, so say that too. Don't doubt yourself. You aren't making a diagnosis, you are asking for an expert to assess your child based on your (not inexperienced) view that ASD is probable.

Good luck and feel free to DM me if you want practical advice, or just to vent.
My DS is also good at masking, and has amazing self-control and so survivies each school day without disaster. He is accademically able and just about meeting national standards, so school had not noticed anything much. I really had to push them to see what was happening, because at school it was subtle. At home, it is blindingly obvious.

It varies so much from place to place as I understand. Could you approach the school nurse via email as they take over from the hv (who has been the driving force behind my ds's assessment)?