“Would you like a diagnosis?”

These five words, uttered by the paediatrician, were like music to our ears. Our son was seven years old at the time and had been through his fair share of assessments since age three. Speech therapists, psychologists, health visitors, doctors and occupational therapists had all poked, prodded and tested, but none had ever dared to provide a label for his condition.

And life without a label can be confusing. We had to start creating phrases to try and explain our son's erratic behaviour to others. “He's got... erm... learning difficulties... special needs... you know?” we blustered, as we smiled sheepishly to the umpteenth stranger giving us condescending looks in the supermarket, or the friends and family members kindly asking how he was doing.

Every assessment promised the Holy Grail: a name for this curious condition that causes this boy to hide away, living in his own bubble, wincing at sensory overload and having meltdowns at the slightest provocation. It seemed like he was a mystery to everyone, no label was forthcoming.

I think we'd given up hope when we went into the paediatrician’s office that day. We certainly were not expecting the chance of a diagnosis, not after four years of getting nowhere. “Yes!” I snapped back quickly. “Yes! It would be really useful. It's hard not knowing what to say to people when they ask what's wrong with him.” She explained that some parents don't want a label or diagnosis, they find the whole process too distressing. But in my mind, the problem is there, whether you have a label for it or not. Accepting it and dealing with it is the only way forward.

Weeks passed. More tests. More assessments. More questions. And then finally a letter. A letter that confirmed what we probably knew all along: our son has autism. A huge wave of relief came over me. Finally. Now we can start to really help him by educating ourselves about autism, connecting with others and getting the tailored support we need.

The diagnosis was not over and done with though. Fast forward a few years and CAMHS suggested there may be another aspect to our son's condition. Further assessment (!) revealed that he also had ADHD. Again, this diagnosis was extremely useful. It explained some of his more extreme behaviours: inattention, impulsivity and no sense of danger.

Nowadays if someone asks about my son I tell them he has autism and ADHD. And even if they don't know that much about the condition, they have some idea of what his difficulties involve. Diagnosis has been invaluable.

 

Louise lives in the West Midlands with her husband, three children and a houseful of pets. She home-educates her youngest son who has autism and ADHD.