Autism assessment: our experience

Whether your child is on a waiting list for autism assessment or you are considering taking the first step for referral, it's normal to be curious or anxious about what's involved in the assessment process.

We got Fraser's autism diagnosis last August - nearly a year ago - so I thought it would be useful to describe our own personal experience of the process.  However, I'm aware that the format and time taken to do an autism diagnosis can vary wildly from one area to the next, so if you have had a different experience please do chip in in the comments form below!

Our experience began in late January last year when we decided to go to our GP about arranging speech therapy for Fraser, as he still hadn't spoken (at age 2.5).  At this time, we hadn't done anything other than search Google for children with similar delays to Fraser.  We had come across the word 'autism' but it's probably safe to say we were still in denial that Fraser was a good fit!

Our GP asked all the right questions regarding play, non-verbal communication, social skills etc. to identify that there was a bigger issue than just speech delay.  He referred us to our Health Visitor, who arranged to do a home visit within the week.

The Health Visitor asked even more probing questions that frankly made us feel a bit dim for not realising there was a problem sooner! She asked about toy interactions, following instructions, responding to his name etc. and decided the first thing to do was check his hearing.  He had had his hearing checked at birth, but there'd be no harm in checking it again.

Despite there being a bit of a waiting list for hearing checks, we actually got this appointment quite quickly (within 2 weeks) due to a cancellation.  Fraser couldn't respond to questions etc. during the assessment and was quite distressed by the experience, but as far as they could tell his hearing seemed to be OK.

Our Health Visitor also put in a referral to the 'pre school community team', which gave us access to a 'pre school educational home visitor' who would help us liaise with the nursery Fraser would start at after the summer.

By this time, we're into March.  We also had a visit from the head of the local child development centre (CDC), who felt it would be appropriate for Fraser to get a place there for one morning a week.  The centre works with children under 3, so Fraser was only just eligible as he was close to his 3rd birthday.

Shortly before starting at the CDC, we had our first appointment with Fraser's paediatrician.  She was absolutely brilliant - very reactive to Fraser and managed to examine him whilst keeping him so relaxed and chilled out that he nearly fell asleep :)  We talked in the appointment about getting an autism assessment and she hoped that we'd be able to do this through the CDC.

Fraser started at the CDC after the Easter break and there were two BIG benefits: firstly, we got access to all the therapists and specialists instantly (without having to join any of the usual waiting lists).  So, through the CDC we had access to a speech and language therapist (SALT), occupational therapist (OT), physiotherapist and clinical psychologist.  Secondly, they were indeed running a pilot scheme for autism assessments for under 3s, which we were eligible to take part in.

The autism assessment began in May.  It was a multi-disciplinary assessment involving Fraser's keyworker at the CDC and all the therapists and specialists mentioned above.  As it was a pilot scheme, the whole process was overseen by a consultant paediatrician who was very experienced in autism assessment.

The bulk of the assessment took place during Fraser's weekly visit to the CDC, without us being there.  There were a couple of home based 'interviews' by the OT and SALT but they were so informal we barely recognised they were part of the assessment.  We also had an interview with the clinical psychologist, which DID seem more formal, but she came across very positively and we felt at ease during it.

We also had an interview with the consultant paediatrician who was overseeing the process.  While no actual diagnosis was made at this point, it was fairly clear from the paediatrician's reactions and comments that we were going to get an autism diagnosis.  By this stage, we were fully expecting it and were looking forward to getting it "over and done with" and put in writing!

It was quite a refreshing interview actually, as the consultant paediatrician talked quite frankly to us about Fraser's issues, developmental age etc.  And while she wasn't allowed to actually say 'autism' before the official diagnosis, we were able to talk about "children with needs similar to Fraser's" instead (which equated to the same thing).  Because the assessment rules are strict that nobody actually suggests an autism diagnosis BEFORE the official diagnosis, it got to a point where it felt as though the specialists were pussy-footing around us - so it was nice to be able to talk a bit more frankly.

The diagnosis meeting was set for late August. The morning would be the specialists on their own, discussing the case and trying to reach a conclusion.  Their conclusion would have to match the consultant paediatrician's conclusion, or Fraser would have been referred to the standard autism diagnosis team.

Thankfully (?),  everyone was in agreement so we were given the official diagnosis that afternoon in person.

The whole process - from first visit to our GP to receiving the autism diagnosis - took 7 months.   Over those months, we had had so many opportunities to discuss Fraser's difficulties that we had come to accept the autism diagnosis long before it was officially made.  That did make it easier on the day, but of course it was still hard to hear.

A month or so later, we received a written report from everyone involved in the diagnosis with their own individual observations and conclusions.  It was probably harder to read all of that written down in black and white than it was to get the diagnosis, as it was so specific.

But anyway - I can't fault the process. I know in this area, the waiting time for autism assessment in over 3s is 2-3 years, so for everything to have been done for us in little over 0.5 year is brilliant.  And we got access to the team of specialists that we really needed and that support is on-going with regular visits at home and at nursery.