Toni Hunt is now an expert at overcoming obstacles and navigating bureaucracy, but she shouldn’t need to be.
My autism journey began in 1998, when my son Peter, who’s now 32, was first diagnosed. At that point the word autism was new to me.
Peter’s language had progressed well until he was about 15 months old, but after this he lost all speech, except for a few noises with which he tried to express himself. I was convinced that taking his dummy away and enrolling him at nursery would allow his speech to take off, but his speech didn’t return fully until he was seven years old.
As well as his verbal delay, other things had a profound effect on our lives, including his inability to sleep through the night, his need for a repetitive routine, and his desire to only wear certain clothing. So I jumped on a roller coaster into the unknown, and my journey began. I embarked on a course, which has been hugely demanding but equally rewarding as he has grown into a caring adult. Of course, there have been problems along the way, but these have empowered me to be a strong advocate for his care and support.
Over the years, I have begun to consider myself somewhat of an expert when it comes to getting the right help and support, but what I have found is that little has changed. Parents are still having to fight for the help and support that those on the spectrum desperately need, whether child, young person or adult. Nothing is straightforward, and you must be ahead of the game to get the required outcome. I am amazed that the problems I had to deal with in 1998 are still very much the same today, and parents are still fighting to be heard when visiting their GPs. In addition, they are having to battle with local authorities over schooling or additional help as a family.
Peter attended special provision, both primary and secondary, and with his Statement of Special Educational Needs (now EHCP’s ), he also attended a residential post 16 provision. He would not have been able to cope in mainstream, which is sometimes where parents are struggling. I’ve heard of so many children being home schooled because of the challenges they are experiencing in insufficient provision.
Today, as an adult, Peter lives on his own in a flat close to our family home, where he has meal support from a care agency, and help from me with paying bills, doctor’s appointments and cleaning. This is something I never thought he would be able to do, so despite all the mishaps we’ve had along the way, there is an element of satisfaction that some professionals out there who helped us as a family, as well as my own dedication have helped shape the wonderful young man he is today.