When my son was two and a half years old, a family member recommended that I put him in a home. Fast forward nineteen years, and this same son is nearing the end of his third year at the University of Cambridge where he reads history and is set to graduate with a high 2:1 or maybe a First. He has come a long way, but the journey has not been easy.

I could tell immediately with a mother’s instinct that something with my newborn son was not right, and yet it took nearly a decade for him to get an Asperger’s diagnosis. For years, I dragged him to GP’s, neurologists, speech/occupational/neurological rehabilitation therapists, osteopaths, homeopaths, and even cranial-sacral somato-emotional practitioners. I ceaselessly sought answers, cures, reassurance. My son was suffering. We as a family were in great emotional pain.

What we needed, besides the diagnosis that came so late, was a case manager or point person, someone who understood our son and his needs, and who could advise us on appropriate treatments and therapies, as well as offer help with educational and emotional challenges. This is an important service that an Autism Centre of Excellence would be able to provide to families such as ours.

For us, getting an ASD diagnosis was a massive relief. I embraced this label, as it provided me with a framework, with a support group, and with an explanation to my fragile son as to why he behaved the way he did and felt the way he felt. Suddenly, his patterns of communication, his anxiety, and social deficits and quirks made sense, to him and to us.

It is absolutely key that research in the field of autism be supported, so that we can not only consider causality but more importantly so that we can come up with effective interventions and treatments. I am particularly interested in efforts to leverage the incredible talents and gifts that many Asperger’s people possess, and to find ways to educate employers, teachers, and families about ASD.

My son is a revelation. He has discovered his passion, which is history, and is now able to live independently at university, having attended special needs schools for nearly his entire educational history. I want other families to benefit from the early intervention and the ongoing support which would have made our journey easier.

Leda Nelis, ACE donor and mother