What autism services do I need?

Today I’m going to speak about diagnosis and autism services in a clinical way. I will leave the enormous emotional aspect aside for another time. However I will say this, as I write here my son Conor is working across from me. He was diagnosed as autistic, intellectually disabled and profoundly language disordered. Yet he is now programming the very Language courses that help him recover. So remember a diagnosis is only just that, it does not define your child.

Back to the autism services topic. If your child is not developing language typically, it will be important to build an understanding of what is going on. For Val and I the most obvious thing missing was speech. The boys appeared to answer to their names and responded to sound. But Val kept saying to me: they’re not talking. There was a history of late talking in my family. In fact I had not uttered a word much before 7.

Ultimately Val insisted that we got the boys checked by specialists (our GP said wait until speech appeared) and the boys were immediately diagnosed with otitus media (fluid in the ear). Subsequently moderate to severe hearing impairment was also diagnosed. I remember the audiologist saying that the diagnosis presented challenges. But if you were to have a problem, she said this was the one to have.

We used the diagnosis to guide what language services we would need. Speech and language therapy was on the top of the list. And yet the more we got into this, the more our speech therapist said there were bigger problems. It turned out that the boys had fundamental language issues. Over time we conducted a raft of tests. These indicated that the boys were not only hearing impaired. They were also pragmatically, semantically and syntactically language disordered and were profoundly dyspaxic.

What this meant was that they could not hear or learn language. And even if they did, they lacked the physical ability to express themselves. They had several conditions all of which together led to major problems learning how to communicate. They were autistic, that is, they met the combined criteria to be labelled with this broad diagnostic term.

This process, while painful was important for 2 reasons. If we were to treat the boys effectively, we needed to know exactly what was broken. This would allow us to get working on the problems. To figure out how to make good choices about who should treat the boys and when. The second reason was to ensure that the bodies responsible for these autism services delivered them free of charge as they were needed.

So a single diagnosis of autism alone was not enough. We needed clarity and evidence as to the differing aspects of the total condition. As parents we needed to understand the total picture of the boys’ condition. This lead to the decision process surrounding the boys’ education and clinical care. And we frequently had to go to war (court) to get the combined autism services they needed.

So to summarize, getting a differential diagnosis for your special needs child is vital. It enables you to understand what your child’s learning differences are. This defines what autism services are needed while providing the justification (sometimes termed ammunition!) to go after these autism services.