"Lost very valuable time for early intervention."

When my child was around 17 months of age, I phoned my health visitor to raise concerns about my child's language/speech/understanding difficulty. She was just an odd quiet girl in her own world. My health visitor advised to 'wait and watch' as she thought my child was too young and she needed more time. She added that there was a formal assessment due at the time of my child's 2nd birthday when she would see her.

I sought some help over google to help my daughter's speech, but she continued to struggle. I rang my health visitor again when my child was 23 months, just to remind her about us, and also expecting some assessment dates. My health visitor mentioned that the time for assessment had changed and it was carried out at 27 months. So, on her 2nd birthday my child was still a little baby, very dependent on her mom- Needed spoon feeding with meals lasting an hour, hated bath-time, took an hour and a half to fall asleep, could not communicate her needs/dislikes in any form other than crying. My child consistently did not meet the milestones in the red book or catch up later. I faced struggle at every aspect of her upbringing. I felt like a failure every day. 3 months later, my health visitor carried out a mandatory developmental screening. YET, I was advised to continue to 'wait and watch' (while playing/talking as much as I can). She made a record of poor 'speech development, short concentration span and social skills' to be reviewed in 3 months. After being told to "wait, watch, continue to play and talk for 10 months" there was STILL no definitive action plan.

I was left in dark, so worried that I couldn't eat or sleep. Few weeks later, I managed to get a consultation with a private speech therapist who thought my child was in serious need of help and that I should avoid the health visitor, and raise the concern with a GP. I go to a GP who refers me back to the health visitor for a speech and language therapy assessment. She does a one and half hour long assessment and concluded that my child "did not tick enough boxes" (as said to me). That day I cried all day. My private speech therapist came home to comfort me and told me that I needed to stay put and speak for a child who had no words to express her struggles. She confirmed that my child's speech was "not just a delay, but a disorder". With my private speech therapist's support, I gathered myself to phone the GP again who then agreed to refer me to a paediatrician. While on a long waiting list to see a community paediatrician, I decide to purchase a flight ticket to meet a developmental paediatrician privately- who after 14 assessments ( ADOS, Munich functional scale and many others) over varying appointments handed me my child's diagnosis at 29 months. My child was on the Autism Spectrum of Disorders. I had got answers to all my questions. I flew back and handed in the report to my GP which was supposed to be passed to our community paediatrician by my health visitor. A month later I meet my community paediatrician who dismisses my concerns and tells me she is "definitely not autistic". Two days later, my community paediatrician phones me to say they received the developmental paediatrician's report. She had found that the developmental paediatrician who assessed my child to be immensely qualified in the field of Autism, the report thorough & detailed. She suddenly seemed to agree with the diagnosis and all that's in the report although she was in denial at the appointment.

I am afraid that almost all the health professionals I interacted with across the NHS Grampian over the 12 months in this process, have little awareness, understanding and experience in the field of autism. In the process of seeking help, my concerns were heard, but never listened to; my child refused services that she was much deserving of, our family put under a lot of undue stress. Our family was torn apart emotionally & financially, and lost very valuable time for early intervention.

It only took me less than two months to be heard, supported and my questions answered when I worked with the right professionals who had the knowledge and expertise.

I believe that a parent is always the expert in their child, their gut feeling and instincts matter. Health professionals should train and educate themselves than fobbing off parental concerns.