Young Healthwatch volunteer, Liam, shares his ASD Diagnosis Journey

Definition

ASD (Autistic Spectrum Disorder), also known as autism is a neurological development disorder, usually caused by hereditary genetics or environment during pregnancy or throughout a child’s infancy. There are many symptoms to autism such as a lack of communication and interaction skills (avoids eye contact, lack of empathy etc.), repetitive behaviours and interests (follows routines religiously, plays in the same way each time etc.) and other symptoms such as gastrointestinal illnesses, anxiety and delayed cognitive, language and movement skills.

Diagnosis

Fortunately, I am what is considered a ‘high-functioning’ autistic person. This could mean that I don’t show many symptoms, show very mild symptoms or I can mask my symptoms very well. This factor likely contributes to my extensive, 2-year diagnosis process.

It all started at the beginning of 2017 when I was 9 years old. Over the first few months of the year, I began developing a habit of suffering a seizure every few weeks. This prompted my parents to get me an MRI scan in the L&D Hospital to check me for epilepsy and other disorders. When these scans came back negative for any such disorders, my family self-referred me to Edwin Lobo, a paediatric mental diagnostic centre in Luton.

Following a series of tests for autism, in May of the same year, they confirmed I didn’t have autism but severe anger issues and the frequent seizures – that had died down by now – to this day are considered ‘random episodes.

For treatment of these ‘anger issues’ I was referred to an anger management course run by CAMHS. This course consisted of 2 hours out of my primary school education, each week, over 6 weeks – That’s 12 hours in total! These sessions would be made up of a series of coping strategies and breathing exercises, which, to this day, I haven’t used once.

I think it’s important to mention that the strain mental health services is now under, was beginning to build at this point, which could be another factor of the time taken to get me a diagnosis.

Fast forward two years ahead to June 2018, and following a recurring sense of anxiety and stress picked up by my school’s SEN department, I was once again referred to Edwin Lobo. However, this time, after just a few tests and examinations, my consultant told us that I had undeniable, high-functioning autism, in complete contrast to my previous visit.

Overview

While my ability to mask my symptoms, in combination with the immense stress the Mental Health services in the UK were under, are both reasonable explanations as to why my diagnosis took so long, I still feel failed by the NHS, the education system and even to an extent, the government for not picking up my condition sooner, however I’m still grateful to have got a diagnosis as I’m aware some don’t even have that luxury.

While I am upset by the unnecessary loss of education with the anger management course, it doesn’t compare to the daily social and emotional struggles that I am faced with.

Advice

My advice to you is that if you have any suspicion that you or a loved one might have autism don’t wait for school or work to refer you, refer yourself.

Don’t wait, or it might be too late!