Chronic fatigue (?) A levels - argh help

[Abthdust]

Asking the hive mind if there is anything I have missed. (Although potentially this should be in SEN, but hey ho starting here).

DD has just started Y12. She suffers from what looks like CF, but according to the GP (and I agree) is mostly likely masking fatigue from undiagnosed ASD. We have been talking about an ASD assessment since Y7 for various reasons; there was an organisational FU in Y7 where they "lost" her in the system; and then in Y10 it was deemed there wasn't time to get her the assessment in time for GCSEs but the school would do their best to meet needs (which to be fair they were supportive). DD dropped out of school at the end of Y10 and we paid for online schooling and iGCSEs which worked really well. We can't afford to do two more years of online schooling and she was looking like she was much better so has rejoined mainstream for 6th form. She has had lots of medical investigations (GP, lots of bloods, low iron which is now supplemented, paediatrician referral who discharged her after a few months at home cos she went pink and had energy again). It is definitively school that is driving the fatigue. She is super smart and is doing all science A'levels and not finding the coursework that hard; however, being in school is hard. The school have said that she can come in late and leave early depending on her timetable, but she is still really struggling. I started an EHCP process which came back "no, she doesn't have SEN" which I can go to mediation and/or take to tribunal; I am trying to instigate (again) an ASD assessment but it can't be done through the GP where we are cos new rules (although GP has been certain for about 10 years now she has ASD). Her diet is terrible and she has ARFID (on her medical record) but the support we had with that was that the nutritionist had done as much as she could for her. Her diet is not supporting her energy levels, but is not (IMO) the main driver.

My question: have others supported a YP through A'levels with chronic fatigue / very low attendance combined with actually wanting to get the qualifications and being willing to work? Any ideas on what support we could reasonably ask for from school? From LEA? Any other resources / groups we could try?

Anything really that might help. Am feeling somewhat at a loss. I am watching DD turn grey in front of my eyes and having been through this in Y10 I'm trying to figure out what I can do within my gift to support the likelihood of her being able to get her A'levels and at a level that will reflect her academic ability.

Thanks for reading massive long post!

@Abthdust I feel for you. My dd has a medical diagnosis of CFS. There was a point where we truly thought she’d be in bed for life.
If your dd has an official medical diagnosis of Chronic Fatigue then there is an awful lot of support available.
My Dd was able to go in and out of school as her needs allowed.
Was local authority funded for tutoring, only an hour per week per subject, but one to one. That really helped.
All her A levels were all scheduled to begin at 9 am
Received extra time and rest breaks for all her A levels
Had disability assessment for uni which provided taxis, computer, printer, paper, extra software etc……

I understand you are having all doors closed on you! Get yourself to the sn section. They will help you push back. You become a multi faceted pusher. You politely demand the GP actions, politely and firmly, you insist that referrals and letters are sent. You phone medical secretaries. You write re EHCP yet again. Anx you write to Senco and HoY. Then 3 days later, you write again. You have to play the game. You quote law, procedures and policy at them. Tell them they have a duty of care. In the end you start to enjoy the fight!

I understand you are having all doors closed on you! Get yourself to the sn section. They will help you push back. You become a multi faceted pusher. You politely demand the GP actions, politely and firmly, you insist that referrals and letters are sent. You phone medical secretaries. You write re EHCP yet again. Anx you write to Senco and HoY. Then 3 days later, you write again. You have to play the game. You quote law, procedures and policy at them. Tell them they have a duty of care. In the end you start to enjoy the fight!

Where do you do access courses? Are they from online providers or do you attend like college? It all seems confusing. How do you know who a good provider is and what the right sort of access course is right?

Your friend may be experienced but there are millions of autistic people who definitely do not have ADHD.

What makes you say that?

She’s not my friend. She is my psychiatrist. She is also one of the leading experts in ADHD in the UK. She also diagnoses autism and has done for decades.

Simply based on my own personal experience, I would have said a few months ago that I am autistic but definitely don’t have ADHD.

i knew about 10 or 15 years before diagnosis that I was autistic but it never crossed my mind that I might have ADHD until DC2 got diagnosed recently. That made me do rhe ASRS screener, the result of which was that ADHD was highly likely. When I read the diagnostic criiteria for ADHD, I didn’t think they sounded anything like me at all, but how wrong I was.

Because ME is a diagnosis of exclusion. And as there is a link to CF and ND they exclude them.

You can do online ones via various institutions, just google them. Learn Direct is one.

The f2f are at FE colleges. They are 3 days a week but very intense. Last from September to May.

The online ones you can do for longer.

I still don’t understand the logic of this. To get an ME/CFS diagnosis, you have had a substantial loss in ability to function, which cannot be explained by increased demands. This wouldn’t happen if your only issue was neurodivergence.

Granted some neurodivergent people might be often very exhausted and might have brain fog but if you’ve got autism or ADHD and not ME/CFS, you are also not going to have post exertional malaise (PEM). Neurodivergent people have shutdowns and burnout which are not particularly similar to PEM. I know because I’ve had the former all my life and the latter only since late 2021

Anecdotally, I was diagnosed with autism and ME/CFS 3 years ago. The ME/CFS clinic were fully aware that I had an appointment for an autism assessment a few weeks later. The clinic put me in some group seminars with about 10 other people and 3 of us had autism, ADHD or both.

Support in schools is based on needs rather than diagnosis. The school must make reasonable adjustments. If they are a state school, they must make their best endeavours to meet DD’s SEN. Although it is clear she needs more support than can be provided at an SEN support level.

Section 19 of the Education Act 1996 only places a duty on the LA to provide education to those unable to attend school for those who are compulsory school age. While LAs have the power to make provision for post 16 pupils unable to attend, they don’t have the same duty to, so most don’t. This is where having an EHCP is important because provision can be made via that beyond CSA.

My dd had a lot of loss of function though. Couldn’t read, couldn’t walk very far.

She didn’t have PEM as such, but would be very very tired after any congenital or physical fatigue.

But I’m guessing there was an explanation for the the loss of function? Sensory overload? If I’m having autistic/neurodivergent burnout, I get a loss of function too and I am like that all day every day until I recover. And recover I always do. The last episode was caused by a lot of emotional demands in one day. It is very different from ME/CFS symptoms.

With ME/CFS, I can only walk a short distance before i start feeling ill. That short distance varies in length from day to day - sometimes i start feeling ill after 20 metres, sometime I can walk more like 300 metres before I start feeling ill. You don’t get this with autism or ADHD. For context, just before my ME/CFS started, I competed in a marathon. I was super fit, very sporty and loved going for long walks. The marathon was late 2021. Now I struggle to walk to the bus stop.

PEM is a hallmark of ME/CFS and you won’t get a diagnosis without it. If I push through and for example decide to walk 500m or even 50m fast, I will likely feel dizzy while doing it and then the next day feel absolutely exhausted - probably similar to the level of exhaustion I had the day after the marathon - I will also have a sore throat, a pounding headache or aching hips or both. You don’t get this as a result ofnneurodivergence, so I think ME/CFS is relatively easy to distinguish from autism or ADHD.

The loss of function was caused by severe burnout. That’s what the pyschologist at the Childrens Hospital ND unit told us.

Lots of specialists, psychologists worked there. They all recognise it.

She’s been unwell for 5 years. She is improving, but that’s how long it’s meant to take to fully recover from severe burnout.