L's Story and Diagnosis

L was delivered naturally (though a very traumatic birth for me) and was born a healthy little girl in 2018, joining her 13 month old sister. I have always wondered if the trauma I went through during her birth impacted her. Other than a viral meningitis scare at 3 weeks where she was hospitalised, she was a very happy and engaged baby and hit all her milestones, even walking early at 10 months. This all changed when she was about 17 months old, I don't get how or why but it felt like within a month she was slipping away into her own little world. She stopped engaging with her sister, my husband and me. She would not turn if you called her name, she wouldn't make any eye contact and she stopped saying the few words that she had started to say like daddy and mama.

I remember thinking she couldn't hear me, so I called our local GP to get her a hearing test. It was all at the start of Covid, and the lockdown had just begun and I was told by our GP that many children are experiencing developmental delays due to Covid. Getting an appointment to check L's hearing was one of the most long hauled, dreadful experiences I've had, and that is the first step when you find that there are developmental/speech delays. I ended up taking her to a private hearing test and they could not get L to engage and said we would need to see the NHS specialists, which was really concerning for me at the time. (Eventually we did get her hearing tested 2 years later when she was almost 4, through putting her to sleep under a General anaesthetic as it was the only way the DRs could test it). 

Our concerns were growing as we knew L wasn't hitting any of the milestones her older sister had hit, her attention span was at most 2-3 seconds (if that), she wasn't trying to speak and had stopped babbling like she did as a baby. She couldn’t point, or communicate any of her needs. Although she was very mild tempered as a baby she had started to have severe tantrums due to her communication issues. When we first started to track this, we found that in 1 day she could have about 7 hours of screaming/tantrums. Her screaming was so loud we would have people call the police. We had organised weekly Speech Therapy sessions in the hope they might help her speech delays but they didn’t make any difference as she would just not engage with the therapists. As things were worsening, we tried getting support in place with the NHS with no luck and so we made the decision to take L to a private paediatrician who specialised in child development. 

Within that first appointment the doctor made it clear she thought L had autism spectrum disorder and referred us to private specialists for a diagnosis. L had just turned 2 when she had her ASD diagnosis. I remember feeling many emotions, sadness being first and then mostly fear of the unknown as I didn't really know what it all meant for L and I didn't know much about Autism at the time. I do also remember feeling a little relieved when we had the diagnosis, thinking that we could put things in action now that we know what is going on with L to help her. Looking back I wished that we could have been given a bit more information on the difficulties L may have in the future. We were totally unprepared for the realities of what L’s Autism meant for her and us as a family.

The relief of the diagnosis quickly went away as I realised there was no clear avenue of what we could put in place for her at the time. The NHS took another 6 months to recognise our diagnosis, we were told that children aren't diagnosed until they are 4 years old despite early intervention being key. All we thought we could get for L at this time was speech therapy, I remember being offered 1-hour online sessions per fortnight, of speech therapy for a child that was nonverbal, it just seemed totally inadequate. Truth is that L wasn't hitting any of the prerequisites of language development such as eye contact, babbling, gesturing, imitating sounds etc. Because she couldn't engage in any form with adults, the methods of speech therapy were not making any impact on her. We also started the journey to an Educational Health Care Plan (EHCP) through her nursery at the time, which originally sounded wonderful, and I thought that it was going to give L the extra support she needed, which quickly turned out to show me that we would have a lifetime of battles to give L the educational support she needed. L was 2 and a half and receiving weekly Speech therapy and was in a mainstream nursery before I heard about ABA Therapy and in my next blog, I'll go through our ABA journey and the impact it has had on L.