Our story
I had a strong inkling that my daughter was autistic when she was around eighteen months old, and with my son a few months later. They were born prematurely, six weeks early, and until this point, I had put their developmental delays down to this. However, my 12 years as a teacher in my previous career helped me to identify some of the traits I saw in autistic children that I had previously taught – the difficulty with transitions, the obsession with order and routine, the disinterest in peers, the sensory-seeking, the sensory overload, the inconsistent eye contact, the sometimes-destructive tendencies, the delayed and limited speech and the sensitivity to changes in their environments. It was a slow and gradual realisation, but it meant that it wasn’t a shock to receive the diagnoses.
Both twins displayed their traits very differently, but my worries were confirmed by the nurse who conducted their 27-month review. Horrified by my son’s anarchic and wilful disregard for convention (arguably a familial trait, also one that I am covertly proud of), and my daughter’s enjoyment of eating the beads rather than lacing them on a string as instructed, the nurse noted, “they’re very sensory, aren’t they?” I immediately knew what she was tactfully implying.
To my surprise, both twins moved along the NHS system quite quickly, despite having heard that waiting times can be protracted. Their 27-month review took place in December, by the following January they were reviewed by NHS speech therapists, and by March they were seen by a paediatrician (not for diagnosis, for review). The paediatrician went through a checklist of generic questions regarding the twins’ development (both were seen separately), she then conducted some activities with them. At the end of my daughter’s review, the doctor confirmed that she believed she had autism and would place her on the “pathway” for diagnosis. I asked her whether she had any previous cases of patients whom she believed to be autistic but were in fact not, to which she answered a firm “no”.
One week later, my son was reviewed by the same paediatrician. My son is very people-oriented; he lavishes in attention, is very chatty and has been described by many as “charming”. For these reasons, people are often in disbelief that he is autistic. The paediatrician was of the same assumption and discharged him, concluding that he was “just a boy with a lot of energy who gets easily frustrated.”
It was only six months later when the two speech therapists in his group speech therapy session asked to speak to me at the end to relay their concerns that my son was autistic. Their reasoning was that he repeated almost everything that they had said. I naively believed that this was his way of being engaged and attentive. I now know this to be called “echolalia” and that it is quite a clear indication of autism.
My son was then also placed on the pathway, however, his diagnosis would take place at least eight months after his sister’s, who was referred much sooner, because the initial paediatrician who reviewed him discharged him incorrectly. This presented a huge complicating factor, in that we wanted them both to have their diagnoses at a similar time so as to move them to a specialist school, if necessary, simultaneously.
My daughter’s NHS diagnosis
My daughter’s NHS diagnosis occurred almost exactly a year after her 27-month review. During the year-long period, she had multiple speech therapy sessions and was reviewed by an occupational therapist, so the time spent waiting did not seem “lost”. The clinicians employed the Autism Diagnostic Observation Schedule (ADOS) testing, whereby the paediatrician asked us a checklist of questions regarding her development, while another clinician conducted practical tasks with her.
This process lasted under an hour. The clinicians then had a discussion amongst themselves before inviting us back in to give us their verdict. At this stage, the diagnosis did not come as a shock, and was mainly a formality so that we could get my daughter the necessary support that she needed and deserved. The paediatrician was a very kind man, who provided us with reassurances and an abundance of leaflets about support services available. He had a fantastic approach in dealing with us in a very human manner, understanding that the news can be daunting to receive.
I have been very impressed by the level of care given to us by the NHS. Speech therapists are some of the most compassionate and patient people I have met, and the quality of care has been generally outstanding, especially considering the strangulating effect of budget cuts and underfunding that the NHS has endured under the current political regime.
My son’s private diagnosis
Following my daughter’s diagnosis, I decided to obtain a private diagnosis for my son, to move proceedings along. I came across an organisation called Autism Unravelled, run by two dynamic women – Louise (speech and language therapist) and Rebecca (clinical psychologist). After speaking to Louise, we booked my son in for a diagnosis to take place in our home, one month after his sister’s NHS diagnosis.
Louise and Rebecca were warm, reassuring and really understood my son. They are familiar with the anxieties that parents can have, and really helped to demystify our situation. They delivered their result, not in an automated and impersonal way, but they handled us with “kid gloves”, which is exactly what I needed. I wanted to be spoken to like I was a parent filled with apprehension over my children’s futures, and I wanted someone to help appease that, which they did. I felt like we had met the “right” people to help us, to give us counsel and to steer us in the right direction. Louise and Rebecca explained our son’s needs, but most importantly, while also highlighting his strengths. This was new for us, as I felt that until this point all I could distil from previous appointments was, “your child will have difficulties with x, y and z…”
Post-diagnoses
It is easy to feel like you are drowning when you first find out that your child(ren) are autistic – in fear, in helplessness and in an overwhelm of information. My knee-jerk reaction was to Google every possible intervention that money could buy, in an attempt to “remedy” the situation. Did we need an ABA therapist, a music therapist, an occupational therapist, a speech therapist?
A diagnosis is crucial to unlocking support for your child – whether that be in the form of a teaching assistant at school, or speech and occupational therapy, and potentially more. A positive diagnosis of autism is not a life sentence, it is only the start of your new collective journey.
I would also like to stress that your child is no different after diagnosis than the child you knew before. During my time as a teacher, I often wondered why some parents refused diagnosis, as their dislike for “labels” was depriving their child of the support and intervention to which they deserve access. A friend and former colleague, who is a SENCO, once told me, “if you don’t get your child a diagnosis, they will still have a label, and it might be ‘the naughty kid’.” If ever there was a valid argument for diagnosis, this was certainly one.
We are now reimagining our futures, and although there are still lingering question marks, I feel optimistic. I am under no illusion that my “real” children are hiding underneath an invisible veil of autism, and that with time this will be shed. This is the real them. They have quirky, captivating and endearing personalities, their uniqueness is what I admire most about them, and it is our job as parents to embrace that and to help remove their barriers and struggles.
