This case study is written by Alex’s mum, Mirjana. Alex is 17.
January 2023
Alex hugs only people he likes the most, but when he gives you a proper hug, it’s the best hug in the world!
I feel privileged every day!
Alex currently attends the 6th Form at a local special needs school.
He loves horse riding, listening to music, spending time at his computer and with his family. Alex loves good food and going to restaurants.
Alex has always displayed some level of autistic behaviours. When a dietitian pointed out that his food choices and habits coincide with behaviours of young people on the autism spectrum, it clicked for us that we should ask for an official diagnosis.
We suspected from early age that he had dual diagnosis, but were sitting on a fence due to him being so smiley, happy and social. Alex was diagnosed with ASD when he was 16.
By that time, we had already implemented simple tools to support Alex and this made a huge difference to all of us.
- Having meals and snacks always at the same time, 7 days a week, was a game changer. Sometimes it is a challenge for the rest of us, but we are willing to support him.
- Going through the next week’s schedule on Sunday evening and keeping Alex’s wall calendar updated, keeps his environment predictable and keeps him calm. Any family or Alex’s commitments that might increase his anxiety are discussed only a day or two in advance.
- We help him establish routines and stick to them as much as possible.
- We give him space when he needs to process things, either in his bedroom or while he rocks and whispers to himself when around us.
Alex’s open-heart surgery has been a rollercoaster, a real challenge and a blessing in disguise. He was discharged 4 days after the main surgery, only to end up in the operating theatre 3 weeks later due to major complications which came with no symptoms!
Through it all, we learnt about powers of check-lists, patience, kindness and humour.
The DSA’s Down’s syndrome and complex needs group has been very helpful to me personally, especially the monthly meetings which I look forward to.
It helps me feel a bit less isolated, provides platform to share experiences and gain relevant knowledge about dual diagnosis, as well as feel good talking to some lovely people.