Maxim's ABA journey

My son Maxim is a lovely 5-year-old boy who struggles with the daily challenges of living with Autism Spectrum Disorder (ASD). He was diagnosed with ASD at the early age of 2.5 years.

Autism is a lifelong developmental disability that affects all aspects of life, especially how a person communicates and relates to others, and how they experience the world around them. The ASD that Max lives with affects his ability to communicate in a functional way, which makes it difficult for him to progress with his learning. He suffers from severe echolalia, a condition involving the constant repetition of noises or words he hears. Max will repeat certain words hundreds of times a day, and when asked a question, he often repeats it back or doesn’t respond at all.

For Max, this condition means:

Difficulty with eating: Max cannot chew properly and easily chokes on solid foods. He prefers blended or pureed food.

Sleep issues: Max gets overstimulated and finds it hard to control his emotions, making it difficult for him to fall and stay asleep. He wakes up multiple times during the night, often disturbing the whole family.

Communication challenges: Max struggles to properly engage with others and express himself. He is currently learning to use visual aids to communicate at the special school he attends.

Sensory overload: Max often struggles to enjoy the world around him. He gets sensory overwhelmed and refuses to walk. Open spaces like fields and the seaside scare him.

Difficulty with transitions: A simple change in routine can trigger a meltdown, which includes screaming, crying, leg kicking, and throwing himself on the floor, causing stress for Max, his sister, and the whole family.

Social challenges: Max finds it hard to imitate and share his interests with other children.

As a family, it’s always been a challenge to find suitable mainstream childcare for Max or join friends and family for parties or playdates. Max has no sense of danger and needs constant supervision, which is exhausting. His behavior can be unpredictable, uncontrollable, and sometimes self-injurious. The pandemic has made him even more anxious.

As his mom, I am always exploring different therapies for Max, constantly learning, and attending various courses to support him as best as I can. Unfortunately, there is very limited government-funded support, so we fund most of his therapies ourselves.

Lately, I’ve been thinking a lot about Maxim’s future and what will happen when I can no longer support him.

Through extensive research, I discovered ABA (Applied Behavior Analysis), one of the most effective early intervention therapies for children with autism.

ABA is a science-based therapy widely used in the US for children as young as 18 months. It’s drug-free and involves tailored play therapy delivered by trained tutors, both at home and at school.

The younger a child is when they start ABA, the better their chances of improving to a level that allows them to live a more independent and fulfilling life. The goal of ABA therapy is to encourage helpful behaviors and reduce harmful or disruptive ones by breaking down tasks into manageable steps and using a reward system to motivate the child to learn.

Unfortunately, this therapy is not available through the NHS, and it is very expensive. An hour with a consultant costs £70 (they create the program and review progress), and an hour with a tutor costs between £15-£25. Max needs 3-4 hours of consultation per month, plus 20-30 hours of tutoring each week to make significant progress.

Inspired by what I’ve learned, I am determined to give Max the opportunity to develop and start enjoying even the simplest things in life.

To save some money and learn more about ABA, I started working as a tutor for an ABA company, so I could gain in-depth knowledge and provide some of the tutoring myself. I am currently employed as a Trainee Behavior Therapist and receiving ongoing training while helping other families. I am amazed at the progress other children have made with ABA.

Even after a short time of doing ABA tasks with Max, he has made significant progress. He is nearly toilet trained, has started saying more words, is trying new foods, can point at things, answer simple questions like "What is it?", and is showing some interest in interacting with other children. He is responding very well to ABA, and with more hours supported by professionals, he could make even greater strides.

None of this would be possible without your support. I am currently raising funds to cover one year of ABA support, which will cost around £15,000 - £20,000. My target is £15,000, and any donation, large or small, is greatly appreciated.

Thank you so much for taking the time to visit my page and for your support.

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.