Awaiting an ASD assessment

It has been at least a year in getting an autism diagnosis for our preschooler son and even though you know it's coming, it's very very hard when a professional finally gives you those words.

Here's our story so far... Concerns were first raised at my son's 3 yr review at preschool. His language was delayed, he was not playing or interacting with other kids, he had difficulties transitioning between tasks, struggled to settle, faced the wrong way at mat time and generally existed in his own world all day long.

At home, we noticed his play becoming increasingly obsessive, walking around the house for an hour every day with a piece of string, watching it move and flow around furniture. He developed an intense interest in dinosaur models, making them move and roar over and over and over, just like in his favourite show, 'Walking with Dinosaurs'.

His tantrums were the worst I have heard of, his grandparents and even his great gran could not believe how much hard work he was compared to kids they'd raised. 

Anyway we were put on a waiting list to see a paediatrician. You spend so long waiting for this appointment you begin to see it as an end to your problems, but it's really just another step in a really long process of understanding your child.

Skip forward six months, my partner had a stroke (at 36) which put massive stress on us at home. He later needed heart surgery to correct the cause of the stroke. Our son reflected this stress in his own way - he started hitting at playschool, sometimes out of frustration and sometimes just to get other kids' attention because he couldn't talk to them. He would also refuse to wear certain items of clothing - shorts, trousers, hats, sunglasses, shoes. If he didn't want to do something, it was the end of the world and you had better be prepared for a fight - or give up altogether.

Weirdly THIS is the time I decided to potty train him! Dont ask why!! But actually he took to it really well and was dry day and night within a couple of weeks. Though we had our concerns about his cognitive and social development, this was a huge win for us. 

A few more months later we got the paediatrician's assessment, he rated 7/14 on an autism scale (this is in NZ so I'm not sure if the same criteria is used in the UK). The doc said he didn't want to label him yet as he only had a handful of symptoms and not the full house. But I sort of knew then he was delaying the inevitable diagnosis. No other conditions were mentioned besides ASD. He also said they no longer diagnose Asperger's, it's just to varying degrees on the autism spectrum.

Where we are today - at 3 yrs and 9 months, his language and social communication is (IMO) around 18 months, there's little to no eye contact, passive interactions only, difficulty taking turns, following instructions, definitely not asking questions or forming sentences more than 2-3 words. He only talks when he wants or needs something, else it doesn't interest him. He ignores most adults and children his age and only really bothers to talk to his main carer at the time. He is however interested in babies and animals, and older kids who manage to engage him in a physical game.

Last week we had our first Speech Language Therapy session and the lady told me that she could see almost immediately that he was on the spectrum.

I was immensely grateful to her then, for being honest with me and giving me the truth to process properly, rather than leaving me hanging with possible diagnoses like all the reports had so far. I cried and got depressed that night but after talking it through with family and my partner, I am working my way through it. 

It does affect you deeply, you do grieve, and you do get angry and you think it's all unfair. While my peers are having their second babies, I have not been able to. Partly because of post natal depression and anxiety, partly due to the difficulties dealing with my son's autism. Why him? Why us? Will our future kids be affected? Just how bad is this going to get? So many questions fill your head. But the answers take time.

So for now I comfort myself with the thought that it actually could be a lot worse. Besides the obvious stuff like we're not Syrian refugees or living out of a children's cancer ward... His autism is not severe, we are lucky. He learned to crawl and walk on schedule. He toilets like a pro (yeah! so proud!!) He is sensitive and kisses me and says 'I love you' even if he doesn't quite understand what it means! He understands my 'sad face' and even once asked me: 'mummy, alright?' which turned tears of sadness into tears of joy. And ultimately, he is a physically healthy boy with an amazing brain in his head, I just dont understand how it works yet. Those are the thoughts to hang on to.

Once, when he was just a few weeks old, I cooed, 'he's perfect'. My partner jokingly said, 'what, even with the hormone rash and the cradle cap?' And I hadn't even noticed that. 'Yes, even the pimples and the crap on his forehead is perfect,' I said and I totally meant it. Because it was HIM! And that's why you love them, for exactly who they are.

It has been at least a year in getting an autism diagnosis for our preschooler son and even though you know it's coming, it's very very hard when a professional finally gives you those words.

Here's our story so far... Concerns were first raised at my son's 3 yr review at preschool. His language was delayed, he was not playing or interacting with other kids, he had difficulties transitioning between tasks, struggled to settle, faced the wrong way at mat time and generally existed in his own world all day long.

At home, we noticed his play becoming increasingly obsessive, walking around the house for an hour every day with a piece of string, watching it move and flow around furniture. He developed an intense interest in dinosaur models, making them move and roar over and over and over, just like in his favourite show, 'Walking with Dinosaurs'.

His tantrums were the worst I have heard of, his grandparents and even his great gran could not believe how much hard work he was compared to kids they'd raised. 

Anyway we were put on a waiting list to see a paediatrician. You spend so long waiting for this appointment you begin to see it as an end to your problems, but it's really just another step in a really long process of understanding your child.

Skip forward six months, my partner had a stroke (at 36) which put massive stress on us at home. He later needed heart surgery to correct the cause of the stroke. Our son reflected this stress in his own way - he started hitting at playschool, sometimes out of frustration and sometimes just to get other kids' attention because he couldn't talk to them. He would also refuse to wear certain items of clothing - shorts, trousers, hats, sunglasses, shoes. If he didn't want to do something, it was the end of the world and you had better be prepared for a fight - or give up altogether.

Weirdly THIS is the time I decided to potty train him! Dont ask why!! But actually he took to it really well and was dry day and night within a couple of weeks. Though we had our concerns about his cognitive and social development, this was a huge win for us. 

A few more months later we got the paediatrician's assessment, he rated 7/14 on an autism scale (this is in NZ so I'm not sure if the same criteria is used in the UK). The doc said he didn't want to label him yet as he only had a handful of symptoms and not the full house. But I sort of knew then he was delaying the inevitable diagnosis. No other conditions were mentioned besides ASD. He also said they no longer diagnose Asperger's, it's just to varying degrees on the autism spectrum.

Where we are today - at 3 yrs and 9 months, his language and social communication is (IMO) around 18 months, there's little to no eye contact, passive interactions only, difficulty taking turns, following instructions, definitely not asking questions or forming sentences more than 2-3 words. He only talks when he wants or needs something, else it doesn't interest him. He ignores most adults and children his age and only really bothers to talk to his main carer at the time. He is however interested in babies and animals, and older kids who manage to engage him in a physical game.

Last week we had our first Speech Language Therapy session and the lady told me that she could see almost immediately that he was on the spectrum.

I was immensely grateful to her then, for being honest with me and giving me the truth to process properly, rather than leaving me hanging with possible diagnoses like all the reports had so far. I cried and got depressed that night but after talking it through with family and my partner, I am working my way through it. 

It does affect you deeply, you do grieve, and you do get angry and you think it's all unfair. While my peers are having their second babies, I have not been able to. Partly because of post natal depression and anxiety, partly due to the difficulties dealing with my son's autism. Why him? Why us? Will our future kids be affected? Just how bad is this going to get? So many questions fill your head. But the answers take time.

So for now I comfort myself with the thought that it actually could be a lot worse. Besides the obvious stuff like we're not Syrian refugees or living out of a children's cancer ward... His autism is not severe, we are lucky. He learned to crawl and walk on schedule. He toilets like a pro (yeah! so proud!!) He is sensitive and kisses me and says 'I love you' even if he doesn't quite understand what it means! He understands my 'sad face' and even once asked me: 'mummy, alright?' which turned tears of sadness into tears of joy. And ultimately, he is a physically healthy boy with an amazing brain in his head, I just dont understand how it works yet. Those are the thoughts to hang on to.

Once, when he was just a few weeks old, I cooed, 'he's perfect'. My partner jokingly said, 'what, even with the hormone rash and the cradle cap?' And I hadn't even noticed that. 'Yes, even the pimples and the crap on his forehead is perfect,' I said and I totally meant it. Because it was HIM! And that's why you love them, for exactly who they are.