Autism Diagnosis One Year On…

I can’t believe that it was only this time last year that we received Ethan’s autism diagnosis, it feels like autism has been in our world for a lot longer than that. I honestly felt that I was going to have to fight the paediatrician for an autism diagnosis and I walked into the office ready for a fight, it was such a relief to hear that she agreed with what we had believed to have been the case since June 2012.

It was quite weird to have been relieved, and dare I say a bit happy, that Ethan was diagnosed with Autism. It’s not something you wish for when you imagine your future children, but we were hopeful that a diagnosis meant Ethan would start getting the help he needs to progress in life.

So Did Ethan Get The Help He Needs?

After his diagnosis Ethan’s nursery applied for one to one funding, and after what felt like a lifetime of waiting, Ethan was granted just over an hour a session of one to one support.

With moving up to his new room and with help from Ethan’s Specialist Teacher, Ethan has now been awarded two hours of support per session.

Ethan has received lots of support from the Pre-School Education team which have included visits to the nursery and home visits from our Family Support Key Worker. Without the visits from our Family Support Key Worker I would never have known the information that Ethan knows about colours and numbers etc. She believes that Ethan is very advanced in knowing his numbers which is lovely to hear.

Speech Therapy has been very hit and miss. The speech therapist that was assigned to Ethan left for maternity leave the day after Ethan received his diagnosis. She did come back for a few months but has now left the position permanently and she is yet to be replaced. We have had a few appointments with people they have brought in for cover but they can only do so much. To be honest I’m a little disillusioned with our whole speech therapy experience, but the only thing that would solve that would be to pay for Ethan to see someone privately but that isn’t an option for us due to affordability.    

The statementing process is something that we are going through at the moment. Ethan needs a statement to give him access to help when he starts school. I automatically thought that a diagnosis gave you access to a statement, no questions asked, but I was wrong. This is something that involves lots of form filling and reports being filed. It takes a long time and there are lots of hurdles to jump through. When we received Ethan’s diagnosis I was warned that this was the start of the fight for your child, this is so true. The statement is our latest battle.

We have had some amazing help from charities, we had a fantastic day out at legoland and even got to visit Disneyland Paris.

What Has Ethan’s Diagnosis Meant For Us?

My world is totally different from a year ago being that I’m now a stay at home mum. I thought that this would mean I would become a superwoman overnight and our house would always be in order. This didn’t happen, and it did get me down getting my head round the everyday demands of Ethan and all of the appointments we have to attend, but the most important thing is that Ethan is happy.

We still don’t like to talk about the future, as in our expectations for Ethan. We have no idea what he will achieve in his life, perhaps its a bit of a coping mechanism on our part. We just have to live in the here and now, a concept that was totally alien to me but perfect for our family.

Autism and the world of special needs is definitely an unexpected learning curve, one that has many ups and downs, but its our adventure through life.