Desmond (or Desi as we call him) was diagnosed at 18 months old. His older sister also has ASD and so we moved quickly (paying out of pocket) to have him diagnosed as soon as we saw any concerns. We were lucky as there is this really great local program offering 12 weeks of consultative therapy/parent training available for kids who are diagnosed very young and we were so happy to start that with him before his 2nd Birthday. Knowing that there was a long wait ahead and fearful that Desi seemed to be more on the severe side of the Spectrum, we decided to pay out of pocket for a minimal amount of therapy (what we could afford as a 1 income family). We did this for the next year, having to re-mortgage our house to afford it. While it was helpful, Desi required more intensive hours to make more meaningful gains. After a 20 month wait, Desi's number came up for IBI. We started him at our regional Provider (Direct Funding was not being offered at this time as they were in the process of putting together the new OAP). Desi did a year of IBI with the Regional Provider and gained some amazing skills, he became close to toilet trained and very proficient communicating with PECS. And he also got very used to following a routine. After the year there, we moved him to a Private Provider so that he and his sister would be at the same location making life a whole lot easier for our family. He has been there for 11 months and it has been amazing. He is finally attempting to say words, I regularly hear Mama and Dada and "more" and he will attempt to vocalize or imitate many other words when asked. He has become so much more engaged and able to communicate (even without words) and he is far from finished. He started 1 day a week of school this year but he requires full EA support for the most part and the school has a difficult time accommodating that.
Desi will be turning 6 this summer which means he will at most be eligible for $5000 a year of funding, at his current intensity of ABA, his yearly cost is $80,000. We have applied for him to have a placement in an ASD classroom next year which would mean that he would be in school more than therapy However, $5000 will still only cover a tiny fraction of what he really needs. The Government must employ a needs based program so that children like Desmond don't get left behind, he has only just begun to show us what he's capable of and the idea of him losing the skills he has worked so hard to obtain is devastating.