Timeline – The Lengthy Diagnostic Process.

In line with my previous blog, I have made a timeline to depict the process that we went through in order to obtain a diagnosis: 

  • October 2005 – HEALTH VISITOR
    • Health Visitor report entitled ‘Home contact at Mothers request’.  This report details that I have concerns about my son’s hearing / development.  I was informed by the Health Visitor that children develop at different rates and that my son would just take time to catch up.  This didn’t explain why he had surpassed other kids of his age and then regressed.  A hearing test was scheduled and a follow up pencilled in and that was the end of the meeting.
    • We attended a hearing test where my son, as expected, was non-responsive.  However, there was no doubt that he could hear.  He would occasionally look out of the corner of his eye, but generally gave little notice to anything occurring around him.   The Health Visitor that was present, highlighted that he was showing signs of classic Autistic Spectrum Disorder.

 

  • November 2005 – HEALTH VISITOR
    • Home visit to discuss my son’s development.  I discussed my concerns regarding his social skills and general comprehension and was referred to a speech and language therapist and paediatrician for a developmental assessment.  The Health Visitor from the second meeting, again, mentioned the likelihood of Autistic Spectrum Disorder.

 

  • December 2005 – NO CONTACT

 

  • January 2006 – PAEDIATRICIAN
    • Appointment with a paediatrician.  Report details that my son was completely uncooperative during the assessment, therefore, the report was based on my information as well as observations of his behaviour.  The conclusion was that he was ‘developmentally delayed’.  The recommendations were to enrol him in a playgroup, have another hearing test and a review in 4 months time. 

 

  • January 2006 – NO CONTACT

 

  • February 2006 – NO CONTACT

 

  • March 2006 – NO CONTACT

 

  • April 2006 – NO CONTACT

 

  • May 2006 – PAEDIATRICIAN
    • Home Paediatrician appointment.  She notes that my son now attends a playgroup and was due to start at a mainstream nursery in June 2006.  There is also some reported information that is inaccurate with regards to him being able to ‘take off his t-shirt and socks’. He was not able to do this.  The conclusion again, was that it was difficult to conduct any assessments due to lack of co-operation and that a hearing test was essential (this had still not been arranged).  It is also detailed here that a letter would be sent to speech and language therapy to support and speed up health visitor referral and that a referral would be made to the social communication clinic.

 

  • June 2006 – NO CONTACT

 

  • July 2006 – NO CONTACT

 

  • August 2006 – SPEECH AND LANGUAGE
    • Speech and language therapist appointment.  The concluding comments of a report stating that my son had delayed and disordered language development and difficulties with social communication, play and attention and listening skills. The report concludes with a final sentence where my son is incorrectly called ‘Evan’.

 

  • September 2006 – CONSULTANT PAEDIATRICIAN
    • Appointment with a Consultant Paediatrician who compiled a further report which concluded that my son has ‘fairly classical autism spectrum disorder’.   The report was combined versions of the reports of the past 11 months – my descriptions of his abilities and notes about his lack of co-operation during the assessment.  We were told that this was a lifelong disability and that we would be looking at specialised schooling.  The advice we were given was to look on the National Autistic Society website, and to enrol on a programme provided by social services.  

Summary

What concerns me is that the word ‘autism’ was used from the second visit I had with a Health Visitor and in practically every meeting since then.  It does make me question why it took so long to obtain a diagnosis when all of the meetings touched upon ‘autism’ as the probable diagnosis. Waiting one year for a diagnosis is simply too long and in my experience is not unusual. There are families that I work with that have waited much longer than this for a clear diagnosis. 

Some simple advice to parents:

  • Make sure you seek help if you have any concerns as soon as possible.
  • Don’t be frightened to question the information given. Get a second opinion if necessary, there are many highly qualified experts who can advise you.
  • Talk to people who may have had similar experiences. Their advice could be most useful. There are numerous forums and discussion groups on the internet.
  • If you think the process is taking too long, then it probably is! Call and chase people to ensure they understand the urgency.
  • If possible, keep a diary so you can keep track of the process and make notes.  It can be quite a lengthy process and confusing at times.
  • I know it is a stressful time, but try to keep calm and open minded. There is help and advice available to you!