Yesterday was a low steps day for me as part of Autistic Girls Network’s Million Steps Challenge. In part this was due to return to work, but more relevant was my decision to tackle the literal piles of paperwork relating to my child, and to reflect upon the profound impact that the failure of systems and services has had upon all of our lives.
I’m not really sure where the best place to start is – perhaps, a bit like the paperwork, my recollection of events is jumbled and lacks chronology. So I’ll begin with a whole series of appointments that I had entirely forgotten about.
Pain. Profound, but unexplained pain. Constant pain. Physical pain that was entirely invalidated.
Relevant background is that our kid suffered ‘growing pains’ as an infant and primary aged child, and experienced lots of digestive issues – nothing to flag to a doctor, but a constant, in the background. When they hit adolescence, the pain manifested itself in their ankles, knees and hips. They had been really good at sports and hugely enjoyed them, but suddenly, the ferocity of the pain prevented this. The GP drew blanks and suggested physio. The private physio suggested Osgood Sclatters and prescribed a series of exercises, but the pain continued.
Then came the mental health crisis (more in a different piece of writing) where we had to focus on simply keeping our teenager alive and eating, and when we eventually received an autism diagnosis (but critically, not an ADHD one at the same time).
So, we had a child who was marginally more stable in mental health terms, but not able to be physically active when they chose to. The EHCP physical examination – from an ‘autism expert paediatrician’ looked for Marfans Syndrome, but rejected any consideration of hypermobility based on the Beighton Scale. By this stage our youngster was experiencing hip and shoulder, wrist and knee joints overextending and ‘popping’ out of joint. And the pain was often preventing them from sleeping.
We were referred to Rheumatology after lots of asking – the consultant explained that they see a lot of autistic young people with joint pain, but Connective Tissue disorders are not diagnosed locally so they couldn’t help. Perhaps take paracetamol?
We were referred to podiatry, but they couldn’t see anything wrong so referred to physio. Physio suggested some exercises but were unable to help. The incapacitation was really affecting our youngster and they self-advocated for extra support – the brilliant GP suggested codeine for the worst episodes, and eventually our youngster was referred to the local pain clinic where more physio was recommended, and a psychologist to help ‘think through the pain’.
None of these services were connected. None share notes. Each one required an appointment at our local childrens’ hospital; each one required a whole telling and retelling of the history. Each one required a different person to physically touch and examine our child. And all in the same environment where we had attended for some of the worst outcomes of the mental health crisis. No records were passed back to CAMHS or to any ‘autism expert’. And our child was constantly triggered and consistently dismissed. How bad could the pain be? Did they think it could be psychological?
And as my kid’s advocate and constant companion, I can see exactly how easy it would be to accuse me of FII (Fabricated Induced Illness). Because the pain WAS real, and there is a very good and plausible reason for it. Its just not diagnosed where we live. And because of that, my child was totally invalidated and told the pain was without a physical basis, and they could ‘think themselves out of it’?
Hence the rotating through various diagnosticians and services. Hence the piles of letters in my disorganised filing system.
My child meets all of the criteria for Ehlers Danlos Syndrome, considered a ‘rare disease’, unless you are Neurodivergent, then the incidence rate is very high compared to the ‘general population.’
And because of that lack of knowledge and understanding, the lack of ‘connecting the dots’, we entered a cycle of being told that there was no reason that they could be in the pain that they described. All of my child’s digestive difficulties, joint pain and dislocations, even their dysautonomic symptoms (I have also blanked the memory of an afternoon spent in the cardiology unit checking their heart output), their asthma, their rapidly developing skin rashes, their migraines – all of them can be explained by EDS.
It literally pains me to think that if we had one clinic in each region where an autistic person could go for a full physical health assessment, we could have real integrated and inclusive support. So much money could be saved, so much agony could be avoided. And we might have a chance to explore conditions like EDS in good time and with enough compassion for a sufferer to have a better self-understanding and potential for specialised and tailored support.
As a parent and advocate with my child, I have seen such little expertise in terms of the autistic experience outside of autistic-led groups. We need to do better. My child deserves better.
What if we had centres in each region that dealt with all experiences of Neurodivergence, including assessment and diagnosis, post-diagnostic support, adapted therapies where co-occurring mental health conditions are identified, adapted therapies for other crises – like bereavement, traumatic events, EHCP plan writing for school aged people. And also, medical issues that might be specific to ND folk, or where ‘standard care’ might be hard to access – visual processing identification and support, auditory processing and support, experiences of pain and joint mobility, disordered eating – even maternity care for pregnant people? Where records are kept and issues joined up. Where MDTs are exactly that, not siloed in mental health services.
Epilogue: whilst my child doesn’t yet have a formal diagnosis of EDS, we are using strategies from the excellent support groups on line to help manage their pain, and mitigate the worst experiences. Additionally, we have visited a private orthotics clinic where they have been fitted for joint supports which help them whilst walking long distances. We have a wheel chair for when the pain is really bad, but when they want to go out. They still can’t participate in team sports which is something they loved, and was undoubtedly helpful to their ADHD profile as well as a sense of physical wellbeing. But we’re getting there.
If you would like to understand more about EDS look here:
We must bring an end to the diagnostic odyssey of rare diseases – GOV.UK (www.gov.uk).
If you think a child or young person you know has EDS this will be useful to send to their school: https://theschooltoolkit.org/