Getting a diagnosis
First things first. You will not get a diagnosis of Hyperlexia, because as it stands at the moment, it does not exist as a diagnosis in its' own right. The most likely outcome is that your child will (eventually) receive a diagnosis of either Austism Spectrum Disorder (ASD), or Social (Pragmatic) Communication Disorder (SCD), that is not to say however, that you cannot get your child's hyperlexia recognised and officially mentioned. It is my belief that this is of vital importance in getting our children the most appropriate help and support, and hence giving them the best possible chance, but you are likely to have to push hard for it. In the past, the majority of children with Hyperlexia were classified as having either High-Functioning Autism, Asperger Syndrome, or PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified). However, none are these terms are now used, instead anyone with a disorder that places them somewhere on the autistic spectrum, is simply given a diagnosis of ASD.
The road to obtaining a diagnosis in the UK is a long one, and before you embark on the journey it is probably useful to familiarise yourself with the diagnostic criteria used. All clinicians use the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders), as their primary guide, even 'bible', when making a diagnosis, and we have provided the full text of the diagnostic criteria for both ASD and SCD here.
The information provided below is based on both official NHS information, and our own (ongoing) experience of the process, however there may be some regional variations in this, so it should be treated as a general guide to what you can expect.
How you start the process depends in part on the age of your child. If your child attends school or nursery, it is worth enlisting the help of your childs teacher or the SENCO to help you. If your child is younger, or if the school will not make the referral for you, your first port of call should be either your GP or Health Visitor. I would suggest that you compile a list of all your concerns, and all your childs 'differences', odd behaviours etc. Our experience suggests that, if your child does not attend any educational setting, you may have to push hard to get a referral.
Typically a referral is made to either CAMHS or your local Child Development Centre, which have a Social and Communication Disorders Assessment Clinic. You should receive confirmation of the referral within a few weeks, together with a questionnaire to complete and return. Once they receive the referral, any additional information supplied with it, and your questionnaire, they will, if necessary, gather information from other professionals who know your know, e.g. Speech and Language Therapist, or Nursery teacher. They then hold a team meeting and decide whether or not a full assessment is warranted.
If they accept that a full assessment is needed, they will write to you to confirm this, and then you have to wait .... and wait .... and wait! Assessments are supposed to be carried out within 12 weeks of referral, but sadly this does not happen, and the reality is that you may will have to wait twelve months or more. Once you finally reach the top of the waiting list, the assessment process itself usually takes several weeks. The assessment may include any or all of the following:
- A play assessment with your child
- A detailed interview with parents/carers
- An observation of your child at home
- An observation of your child in their education setting
- An assessment of your child's langauge
- Further assessments as necessary
Once all the assessment appointments have taken place, the assessment team discuss the findings with the team members, and sometimes other health and education professionals who have had involvement with your child. The assessment team includes a consultant paediatrician, speech and language therapists, a clinical psychologist, an occupational therapist, and an educational psychologist.
Soon after this you will be invited to a meeting to discuss whether or not a diagnosis of an Autism Spectrum Condition is being made, or whether it is uncertain and that your child needs to be kept under review. After this meeting you will also receive a written report of the assessment findings.
This is how it is supposed to happen, but our own experience has been somewhat different to this, and has included genetic and chromosomal screening, and an MRI brain scan. I am attempting to put our journey (or perhaps adventure) with hyperlexia into words, and I am writing a blog, detailing our experiences so far. I will post this on here as soon as I have created something reasonably readable!