The Diagnoses Journey – continued to date

So having been initially diagnosed, in January 2015, with Atypical Autism by CAMHS Tier 4, they felt it prudent to have a further assessment with the Paediatrician in a further 18 months time. It was their thinking that, over time, my daughter’s behaviours may be more easily defined and a more appropriate diagnosis could then be given. Whilst I initially felt frustrated, as wanted all the answers there and then, I needed to accept that my daughter was ‘complex’ and that it would take time to get a better understanding of what was going on for her. However, eighteen months seemed like a life time away, particularly as behaviours were escalating rapidly!

Very fortunately for us, and I do think it was by fluke, we were actually seen much earlier (within a matter of weeks) by the Paediatrician and the further assessment commenced.

Having been permanently excluded from school in June 2015 (which was subsequently over turned), it was the locum Paediatrician who pushed for an Educational Psychologist assessment, something that I had been requesting from the school for months.

In conjunction with CAMHS, having also received very detailed information from the Educational Psychologist report and information from school about the challenges they were faced with, the Paediatrician formally diagnosed ‘Autistic Spectrum Disorder, with features consistent with Pathological Demand Avoidance’ in October 2015 (aged 7). This diagnosis made much more sense to me and I felt that, in particular, PDA was a fit.

However, this unfortunately was not the end of our diagnosis journey.

Behaviours continued to escalate and in addition, at the age of 8yrs (2016), it was uncovered by CAMHS that my daughter was hearing ‘voices’.

Prior to this revelation, my daughter had been displaying some very random behaviours which I had previously put down as ‘sabotaging’ and ‘calculated’ behaviours. These types of behaviours included unexplainable things like; deliberately making my clean clothes wet whilst I was in the shower, filling my bed with wet towels and flannels (which I only discovered when I went to bed), filling my bed with toilet roll etc. These behaviours, which had gone on for years, later transpired to be ‘as a punishment’. My daughter explained that it was a ‘punishment’ (from the ‘voices’) for not ‘hurting’ me or her sister. It was almost that the ‘voices’ were giving her ultimatums. As things progressed, these ultimatums also included significant incidents ie cutting chunks of her own hair off rather than ‘strangling’ me. This was extremely scary not only for me but also my daughter! I felt totally out of my depth!

All of these behaviours were naturally extremely worrying as a parent, however having uncovered the fact that my daughter was hearing these ‘voices’, CAMHS didn’t appear to be investigating this any further. I couldn’t get my head round this as they were a massive concern for me! So I took the lead and explored this further by way of doing a mind map with her. This, worryingly, revealed that my daughter was experiencing a family of 7 at the time – the ‘mum, dad and baby’, in her words, being the most aggressive and scary.

Even from a tender age, my daughter would verbalise that she ‘is going to hurt someone’ prior to doing it and even indeed that she ‘needed to hurt someone’ – was this also caused by the ‘voices’ that we now knew about?

Other, historic, bizarre and random behaviours included things like:

  • I thought she was going to kiss my hand, but sunk her teeth into my knuckles instead – later apologising but stating that she ‘can’t resist biting loose skin’
  • Whilst brushing her teeth one day, calmly stating ‘you know I’m going to get you one day don’t you?’ (threat on my life)
  • Asking for apples for pudding but then randomly throw them out the back door

The suicidal thoughts were also prevalent at this time and my daughter would often talk about how she wants to die and even threatened to jump out of the window! As a parent it’s totally heart breaking to hear that your child no longer wants to live!

Self-harming was also a big concern for me, as she would often bite herself, cut her own hair, create lesions on her skin from picking and scratch herself – not always in anger or frustration either, sometimes this would happen randomly and out of the blue.

In my mind that had to be something else that was going on for my daughter, however time and time again CAMHS would explain these random behaviours away by telling me that these were due to her Autism and PDA. They explained that because of these, my daughter blurred reality and fantasy. How could they explain away my daughter saying to me two weeks before squeezing a pet fish to death that the fish needed to go up to her sister’s room for their own safety? To me, (something that I didn’t pick up on at the time as a warning) this was something that she had managed to keep at bay for a fortnight prior to being compelled by the ‘voices’ to carry this out.

I continued to regularly update CAMHS with my ongoing concerns and eventually they agreed to refer us for a second opinion.

This wasn’t as straight forward as it sounds though and many months were, in my mind wasted, with CAMHS not knowing their own process. I was told that a CTR (Care Treatment Review) was required prior to any referral, then to be told no it wasn’t – this was batted back and forth for months.

When the decision was finally made that a CTR was not required, they then started to explore the options. The option that CAMHS felt was best, was to refer my daughter to Great Ormond Street (GOSH) as an inpatient. Having spent many a long night researching this process, I was horrified to learn that the inpatient assessment at GOSH would mean that my daughter could potentially spend up to 6 months in hospital and I wasn’t even allowed to stay with her! In fact I was informed that I was only allowed to visit 3/4 times a week! There was no way I was going to put my eight year old child in such a scary position as to be away from me (who she had never left) for 6 months?!

So again, I set about researching what other options there may be and I was fortunate enough to come across the Maudsley hospital, not only from my research but also because I had somehow found myself being invited up to a Master Class for Psychiatrists to present our case as a case study. The Professor leading this Master Class queried why we were being referred to GOSH and not the Maudsley? The Maudsley hospital was run by his colleague and one of my biggest concerns, at the time, was that my daughter may have Paediatric Bipolar, something that the Maudsley specialised in. He also confirmed that they could offer an outpatient assessment, so it was a no brainer! So off I went back to CAMHS and requested the referral go to the Maudsley instead.

CAMHS were still quite adamant that they felt my daughter needed an inpatient assessment, however I stood my ground and we came to a compromise that the referral would go to the Maudsley but GOSH would be consulted should there be the need.

As part of the referral I started collating all the evidence and information which I felt they needed to know. I actually ended up sending them literally a whole box full, desperately hoping that they would read it all! To my absolute amazement they actually read through EVERYTHING! I was so impressed as I had never had a professional previously that either had the capacity or indeed the inclination!

So in December 2017, we had our first appointment in clinic. This was it, this was going to be our big chance to find out what was really going on! Hopefully!

We were meet by a Professor, a specialist psychiatrist and specialist psychologist and taken in to a small consultation room. We were not in there very long, it felt, giving a brief summary of outstanding concerns and about how things were for us currently, before the Professor started scribbling things on a white board. It read:

  • ASD – Social Communication – inappropriate facial display of emotions/overfamiliarity – Language – Repetitive behaviour/sensory – mood lability* – Splinter Skills – singing (it’s her talent)
  • Multiple Anxiety – Separation Anxiety, Social Anxiety, Generalised Anxiety, Phobias
  • Obsessive Compulsive Disorder – Obsession – Compulsions – to do with safety
  • Depression – Low Mood, Reduced joy, Sleep/anxiety/obsessions – to do with safety
  • Oppositional Defiant Disorder – Irritability*, Angry*, Aggression*

The last four conditions were described as ‘Pseudopsychotic symptoms *which is negative’! What an earth??

The Professor then went on to scribble on the board the treatment plan:

  • mCBT
  • Aripiprazole* 1mg-3mg
  • Fluoxetine 2mg-20mg

And further scribbled:

  • Safety/Vulnerability
  • Review ADHD diagnosis

WOW, okay this was a massive amount of information to take in!! My head was in a spin! The Professor encouraged me to take photos of the notes he had made on the board and acknowledged the enormity of what he was telling me!

The Professor then went onto explain how he had reached these diagnoses, however my brain couldn’t take in any more information and it all appeared to go a bit blurry after that.

I came out of there in a daze! However, for me it was also refreshing to learn that I hadn’t been going mad, I wasn’t a neurotic mum….there WAS something else going on for my daughter….if fact there was a great deal more going on for her besides the ASD and PDA, which CAMHS had fobbed me off with!

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