“I want our story to empower other parents to ask questions, to involve your local MPs and to ask services to clearly define protocols. Like the symptoms of autism, the experiences with NHS services vary massively from person to person.
My six -year-old son was diagnosed with autism in September 2016, and after pleading with multiple professionals for genetic testing, we finally received a diagnosis of Interstitial Dup15q 11.2 – 13.1 in May 2017.
Dup15q is a rare genetic presentation that is accompanied with a 101 other symptoms – sensory issues and limited speech being the most debilitating for our son Myles.
Attempting normal activities like going for meals is a complete non-starter.
Life with sensory issues with a child that has partial speech is a challenge at best.
Staring and tutting at a small child who is in crisis is inappropriate and not helpful.
First aid and administering a plaster is near impossible.
We have had 49 NHS appointments since February 2018.
Many appointments have been duplicates re-attempting X-rays, and MRI scans to name but a few.
A child with sensory issues needs to be understood and supported with longer appointment slots and not disregarded and treated as naughty.
As a family we have had difficult discussions with the CCG to obtain a sensory integration on the NHS and we were successful.
Following protocols is imperative to your success.
Dealing with autism is hard enough without having to blindly navigate through a misleading and confusing maze of red tape.
I am in no doubt that I may be perceived as an annoyance, but as a mother who was trapped within a very reactive system you either sink or swim.
We chose to be proactive and this worked for us.”
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