DD has been referred for ASD assessment and I am worried

[MotherOfPuffling]

Hi, long time lurker, first post. Things have been difficult with DD, aged 8yrs, for a little over a year now. She was very ill as a baby, constant colic and issues with sleep and not gaining weight, which turned out to be because of a cows milk intolerance. That was established at 14 months, and things improved. Then about 18 months ago she started to develop noise intolerance. It started with things like coughing and eating noises, but has been getting worse. We are now at the point where day to day life is very difficult (for instance she can’t wash her hands unless someone covers her ears, and she still screams throughout, because of the sound of running water). She struggles to sleep, is being bullied at school, keeps saying she hates her life and doesn’t want to be alive if it means being her, and has just been referred for an ASD assessment. However the doctor has warned us that in our area the wait for assessment to begin is at least 3 YEARS, so am going privately through insurance. It may not even be autism, we’ve been warned it could be the result of when she contracted Lymes disease 2 years ago. I am at my wits end with not knowing what to do to help her, seeing her suffering, and feeling like neither of us can go on like this. I can’t even begin to access services because she’s not been assessed yet. I know I am not being unreasonable to find this impossible, but I just want it to stop. Has anyone else been here? Any advice? Posting here as it’s the only bit I ever look at - my apologies if that is not appropriate. For reference she is an only child, ASD runs in the female line in my family and in the male line on my ex’s (her dad) - I strongly suspect I am not NT but have never been assessed. I worry that maybe it is all my fault because of that, and the meds when pregnant that I now know increase the risk of ASD.

If she contracted lymes diesease then please look up PANS/PANDA and have a chat with your doctor about it.
I think that, if we're truely honest, most of us felt like this when we were presented with the fact that are child is ND. Because we imagine a life for them and society will just make that life a bit harder for autistic people. But she is still her and it's nothing you did or didn't do. Has she got support at school? And have you got support whilst you get your head round it all.
I'll also warn you that even privately, there is a ridiculous wait time for diagnoses. Our local private clinic have closed their books completely.

The main advice I have for any parent looking at a neurodiversity diagnosis for their child is to remember that whatever the outcome they are the same person. Nothing changes who they are. But a diagnosis can be a valuable lens through which to understand their needs better. Overall diagnosis tends to be a positive thing, but it can be emotional.

Diagnosis is often made on the grounds of having certain traits associated with neurodiversity and considering the degree to which those traits affect daily life. Some children have many traits but ‘function’ quite well day to day, others may have just a couple of obvious traits that have a big impact, and everything and anything between and beyond these points.

My own child presents mostly as neurotypical but has big issues with feelings and anxiety. Often he will mask very well at school but fall apart at home. He goes into meltdown at the thought of having to leave the house (other than for school which is predictable), and will physically hurt me if I take him to a wide open space with dogs.

Diagnosis, if there is one to be made, will build on what you’re already doing to make her life easier and mean that others (school) have to accommodate her needs too.

Will she wear ear defenders? Sounds like they could be a life saver if so. What is happening with school? Are they on top of it? Changing schools may be very hard for her so they really need to help her as much as possible. Have you spoken to them/met with them about it? It's really important that you do if you haven't already. If she is desperately unhappy though could you home school her? Are there any other schools that she could move to if she is becoming so desperate to leave the one she is at? Perhaps a smaller and very quiet one with a good understanding of SEN if such a thing is available?

What are her issues with sleeping? My son wakes very early and so as a result goes to bed very early, this is what works for him. Worrying about whose fault it is is no help to anyone, perhaps instead loo at each of the issues she is facing and try to come up with ways to help or improve them. You may have done this already and be at a loss in which case a referral to an OT might be really useful. I would go back to the docs and push for that as well although I don't know if there will be a long wait there to. A good OT though can be a god send.

Is she able to verbalise what is making her feel so unhappy? Is it the bullying? School in general? Something else? Is she generally very anxious? This jsut sounds devastating OP and you both really need some help and support.

*look

You don’t need a diagnosis or even an assessment to begin accessing services/support. Things like benefits are awarded based on need, not on a diagnosis.
What are the school doing to support her?

The doctor knows about the Lyme disease as she diagnosed it (bullseye rash and it turns out West London is a hot spot) but has never mentioned PANDA/PANS, I will ask them about this. I didn’t realise there are long waits privately too, that’s not good news. DD is wonderful, but it is hard on the whole family, me and her especially. The school is, not unsupportive exactly but there’s a limit to what they can do without an assessment. This far the extent of their support is making her spend most of each day sitting in the corridor so she doesn’t hear her classmates coughing etc. Of course, that means she’s not learning much at school, which I try to make up for at home, but that mostly consists of buying her workbooks. I have bought her several pairs of ear protectors that have been lost at school, and the school have finally agreed to try to provide a replacement pair. In terms of support for me, my ex is trying but a lot of our effort goes into trying to maintain a reasonable level of friendship so we don’t kill each other. My mum is amazing and has basically moved in to help (I have post viral CFS or similar and she helps with the day to day things) but this is a small 2 bed house and she cannot let go and let me parent my child, and that causes its own issues. I am keeping my fingers my health insurance through work coughs up as I’m only working a couple of days a week now, and funds are tight. All in all the stress is really hard to cope with. I am lucky and do have a friend nearby who I meet for coffee once or twice a month.

She has moved schools once after being badly physically attacked at her old school. I actually moved to a different area to get into a better school, and she was happy there before all this. The ear defenders don’t seem to help enough, plus them she can hear herself breathing and swallowing, which makes her scream 😞 Unfortunately what energy I have goes to paid work, and trying to keep the household functioning, so home schooling simply isn’t an option. Luckily she is bright, and with workbooks is still at / exceeding all academic levels according to the school. I don’t have the faintest idea what support there is or how to find it, other than google, and I’m exhausted trying to find an assessor etc

I apologise for bei g down. I just, I normally cope, but today I am struggling g

Can one access befits if working fewer than 16 hours a week? I had the impression one couldn’t

Does the diagnosis misophonia seem to fit?

If you say where you are in the country, people may be able to suggest private people you can contact.

A private diagnostic assessment may be more expensive (but very useful in knowing what you are dealing with, and opening doors).

Some therapies may help her day to day though, and if not available NHS may be less expensive than a diagnostic assessment. An sensory OT assessment for example, if you can find an OT specialising in children's sensory assessments and therapy.

You could apply for DLA for your child if she needs help greater than a child her age without her condition

Have you tried supplementing magnesium? A deficiency is associated with sound sensitivity. Epsom salt baths can help or you can get a magnesium spray from a health shop.

Wax earplugs make my life so much more bearable!

You might find this interesting:
www.aitinstitute.org/sound_sensitivity_causes.htm

Yes, I think it is misophonia but getting worse, and unsure underlying cause. Sleep, problem is falling asleep takes hours. Happy for me to just lie with her quietly, but she can’t be left alone.gets 8-10 hours a night - I rely on daytime naps to catch up

My son has been diagnosed this year. We were told no chance of him getting a diagnosis before high school and actually it was way quicker than I was prepared for.

I found the whole process nothing but positive. My son is now better equipped to understand himself and me to advocate for him and understand him.

If it is not ASD, then at least you will know and can pursue other things. If it is, then I can only assure you that the diagnosis is a good thing for everyone.

There are some things that sound familiar in what you say although for my son, the falling asleep and noise issues seemed more of a problem when he was about 5 years old. Maybe it could improve over time?

What meds do you think can cause asd if used in pregnancy?
Also - pandas probably is a red herring it’s usually associated with ocd type traits isn’t it?
Maybe you need a paediatrician rather than a referral for Neurodiverse assessment? Do they separate them in your area?

I'd get her assessed by a really good SLT and a really good OT. Her needs - what her struggles are, and what support she needs to have to overcome them or work around them - matter more than the diagnosis (important as that also is).

Both mine are autistic. They're also fantastic, lovely, loving, intelligent and, these days, happy kids, though it was quite a long path getting to this point.

Identifying their needs, and then meeting them, is the name of the game. If you have genetic links for autism then that's far more likely to be the reason than anything else. You can sit worrying and wondering about the cause, but you can't change it - and honestly, you can always find something, anyway. My daughter had absolutely none of the things I fretted about with my son. None. Still autistic, because she's got the same gene pool. It's genes, overwhelmingly, I think.

A school that is gentle, inclusive, and preferably quite small is helpful, and also assessments for Auditory Processing Disorder (the London Hearing and Balance Clinic are aces for that - they're the unofficial private wing of the team who work for ECH's highly specialist clinic, as far as I can see) to go with the OT and SLT.

Above all, she needs to feel that she's okay, and so is being autistic, if she is. Personally, I'd regard that as vital. Undiagnosed autism can make people feel shit about themselves, as the blame for social struggles feels personal. If she knows she's different, and that's okay, then that can make a lot of difference.

@perfectstorm that is a great post. Totally agree. My child's diagnosis was a series of assessments and reports. SLT was so insightful.

Apply for DLA. It's not means tested and should be done on need.

If her sensory issues are around sound, it might be worth looking at hyperaccuesis or auditory processing disorder (if you can find anyone to diagnose the latter).
What is she like with music or white noise? Would playing something through headphones distract her from the sounds of her own body?

My daughter has hyperacusis, and my son APD.

They were assessed, and diagnosed, here: www.lhabc.co.uk

Professor Doris-Eva Bamiou. There's an NHS clinic at the Eastman Dental Hospital, too, if the GP will refer - my son is under their care, ongoing. The waiting list to be seen is six months, but again, you need evidence that the GP can refer to, so a SLT needs to feel there is some sort of an issue, or you need to be seen at the private clinic linked above.

Melatonin was game changer for dc with asd

While I'm at it:

SLTs, and Helen Pearson and Juanita Hurley are probably the best.

OT, and Melinda Eriksen, Aniesa Blore or Diane White are excellent.

For autism diagnosis, then Pebble Autism are great clinically, and a lot cheaper than most despite being very highly qualified/experienced/skilled: www.pebbleautism.co.uk

So are help4psychology.co.uk - they have particular expertise in PDA type presentations in girls, too. Two clinics, one in East Anglia and one in West Mids.

ADHD, especially in girls, and you can't go wrong with Maite Ferrin in London. An NHS consultant child & adolescent psychiatrist, but senior in CAMHS as well. She diagnosed my daughter and was great. She can diagnose autism, too, but that's generally done via MDT working (more than one clinician) so it may be more cost effective to do that via one of the other two, if the insurance doesn't cover it all. ADHD, and it has to be a doctor as only they can prescribe medication, if indicated. recognitionhealth.com/team-members/dr-maite-ferrin/

Sorry, that was muddled - Dr Ferrin has private practice, which I have linked, but I stressed that she's senior within the NHS/CAMHS because that means that you don't have issues with the diagnosis being accepted. With ADHD especially, that matters, if medication is at issue, and you want the local GP to take over the script so it becomes free. Our local NHS were happy with that diagnosis and now the local paeds manage her annual meds review, too.

I'm in a somewhat similar situation except we've been told two years for assessment. DS also having problems at school an d says everyone would be better off if he didn't exist, which breaks my heart.

Also feeling responsibility for things that happened while I was pregnant.

No advice but a lot of sympathy. Take care of yourself.