'The diagnosis was incredibly overwhelming, despite the fact it was confirmation of my suspicion
I think, as a Mother, you always know when something is amiss. When Josh was between 12 and 18 months I started to notice he wasn’t doing certain typical things expected at that sort of age; no pointing, no waving, no clapping and, as time went on it became noticeable there was no speech. He wasn’t mute – in fact he made a lot of noise, but no words. Everyone said to me “boys are late, wait till he’s two and then look into it”. And by chance his Health Visitor duplicated his two year check; so rather than cancelling the second one, I went again and I pushed. That’s the one thing I felt I did for a year; I pushed everyone and anyone for help and support. The first call I made to the Speech and Language department was about a week after my daughter was born in January 2018. Josh got his confirmed diagnosis for Autism Spectrum Disorder on 4th February 2019.
I was prepared to fight a lot for the diagnosis and any support. My son needed the support and I wasn’t going to let him just be another name on a list. And I still have this mentality. The diagnosis process for us was actually quite fast even though all in all it took a year; in many areas it can take several years. I was the annoying Mum that the receptionists in the diagnosis centre will have hated; I chased and chased. Josh was just a name on a list to them, someone they probably didn’t have a second thought about again. But to me, he’s my world. And I think my persistence is what pushed things along. He had several appointments to rule other things out such as hearing tests, and he was seen by his GP, the Health Visitor, Speech and Language therapists, and his nursery were incredibly on the ball. Everyone created reports and once all the evidence was put in front of the paediatrician, he was observed in November 2018. Based upon his behaviour in that assessment and the reports, they gave the ASD diagnosis.
I must admit, you then get the diagnosis, which was incredibly overwhelming despite the fact it was confirmation of my suspicions, and it’s a bit like “OK, now what”. You are told your child has this lifelong condition and then sent on your way to work it out. That’s tough. Again, I’ve pushed for support; got myself booked on courses and taken Josh to ASD classes for toddlers on the spectrum.
How has our lives changed? Well, you have to become incredibly adaptable. Josh is very unpredictable; one day he will be good as gold, another day the slightest thing will set him off. You can’t particularly plan for things; it’s more a case of giving it a go, be it soft play, or a playdate, and hoping for the best. We have learnt which items soothe Josh; a muslin as a comforter, a blue toy, anything that he’s particularly obsessed with at that point (he will spend about a month fixated on a toy that calms him before changing it for another). If he goes into meltdown in public I now know to get him into his car seat as quickly as possible; that’s his safe space and it calms him.
It’s not easy. Josh has hit and kicked at me, he has had meltdowns resulting in him nearly vomiting and it kills me to see. My little girl kind of has to go along with whatever activities we try for Josh because we never want to throw him off with something unfamiliar that he might not cope with. We have daily challenges; eating is always difficult unless it’s entirely on his terms, and his lack of understanding is slow to come. He has no realisation why he can’t take another child’s packet of pom bears even when we explain that they’re not his and he has his own at home. A minor thing like that can set him off and to anyone on the outside looking in they will likely see it as a child being a bit of a brat because they’ve not got their own way. They don’t know the time and lengths it takes to calm him, soothe him, and let him know he’s safe. That’s one thing I still find hard; if he is set off in a public place I immediately feel I have to justify it and tell people he’s not naughty he’s autistic. People judge; it’s how we’re programmed, and I think I am just constantly trying to protect him from that.
On the plus side, the highs are so rewarding. At 3 years and 4 months his speech is coming; he tries to sing nursery rhymes and it’s wonderful. He has only said Mummy once but I know given time, he will say it again. He is very affectionate and I get kisses and cuddles every day. He’s learnt how to ask for his milk. We are getting there.
“There”. I actually don’t know where “there” is. I just know I take things day by day, I try to be kind to myself because I am doing my best in a situation I had never even remotely anticipated back in the days of pregnancy. Josh is teaching me every day, he opens my eyes to his world as best as he can. And it’s magical to see.
Author credit: Fiona Williams