The Diagnoses Journey – up to age 6yrs

Being in the job that I was at the time (Intensive Family Keyworker Service), I was aware that I could self-refer to CAMHS (Child & Adolescent Mental Health Service). So with this in mind and in the absence of my GP knowing the full story or indeed prioritising a referral, I made that referral myself on 29th March 2014 (aged 5yrs). We as a family were struggling and I needed some answers.

My main concerns at time of initial referral:

  • High risk of external exclusion (had already received several internal exclusions and ‘early collections’!) from school (Yr 1 – aged 5/6yrs)
  • Verbally and physically abusive to peers and adults – this was a real issue in school and indeed more so in school at this time
  • Jekyll and Hyde personality
  • Displaying ‘bipolar’ as well as unexplainable ‘odd’ traits

I felt it important to include as much information about my daughter as I could – this could potentially be my one and only shot to get CAMHS to agree to assess and I didn’t want to miss my opportunity. I needed them to take my concerns seriously.

Gathering the evidence

So I set about collating this vital ‘evidence’. I also included an overview of historic and current concerns as part of my referral, which included details of the historic and current challenges. These included:

  • Temperament from a baby to date – the good, the bad and the ugly!
  • Toilet training difficulties
  • Sleeping difficulties  
  • Speech/Language
  • Constant hunger 
  • Physical appearance – she had always been bigger than the average bear 
  • Friendship difficulties
  • Social interaction difficulties
  • The lack of respect for authority figures
  • The increase in violence and aggressive behaviours both in school and at home
  • Sensory difficulties 

I also included information about my daughter’s childcare arrangements and the difficulties she experienced, ‘significant events’ ie the breakdown of my relationship with my daughter’s dad and the ceasing of contact, a summary of her education journey, my employment background (this in particular assisted me and I wasn’t therefore fobbed off and sent on various parenting courses as many other parents have been) and a summary/breakdown of the most concerning current behaviours. I tried to cover all eventualities that CAMHS may have felt relevant.

Clear expectations

I made it very clear, in a covering letter, what my expectations were and requested a full assessment to rule out any potential underlying conditions which could explain the behaviours.

Unlike some, we were lucky in the sense that CAMHS read, listened and took my concerns on board. So here began our journey with CAMHS.

Following an ADHD observation in school (which was ruled out) and my continued persistence to regularly update CAMHS on the current escalating aggressive behaviours, in Oct 2014 we were referred on to CAMHS Tier 4 to explore the possibility of Atypical Autism. My daughter was subsequently diagnosed with Atypical Autism in January 2015.

“AUTISM”……how could my daughter be Autistic… wasn’t something I had even googled!?

TOP TIPS to include in a self referral:

  • Include historic information about behaviours, eating habits, sleep habits, toileting, meeting milestones
  • Include current information and current concerns
  • Obtain any concerns from other settings ie childminder/nursery/school
  • Obtain any concerns from friends and family
  • Any immediate and extended family medical (particularly mental health) history (diagnosed or not)

All of the above can be very difficult to admit to yourself let alone write it all down! However, it is so important that CAMHS have as much information as possible. This initial information can make the difference of whether they decide to assess or not!

What I wished I had also done:

Something that I didn’t ever do, which with hindsight would have been really helpful, was go to my GP to discuss all my concerns as they evolved. To have your GP on board from the get go will really support any potential referrals ie to CAMHS. Whilst some professionals are good at listening to the concerns from parents, unfortunately not all are and it just adds extra ‘clout’ if you have already got a ‘professional’ on board.


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