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.

Hi.

We heard those words is april. Since then it's been a roller coaster of emotions - some so bad you darent say them out loud for fear of people thinking your am awful parent. However having spoken to a few people now the way it was put to me is "your grieving for the child you thought you were going to have" and all emotions, both positive and negative are part of that process. Doesn't mean you'd change your child, doesn't mean you don't love them. It's a mix of grieving, fear of the unknown and the future.

If it makes you feel better I knew. I knew the signs and despite this I broke down when the words were said. Two months later and I'm a basket case everywhere day but hey, that's progress from the first two weeks when I lived in my pjs and didn't leave the house!

So your not alone. Cry, shout, eat crap and watch Bridget Jones on repeat. Someone somewhere is doing the exact same thing! X

Hi, we are waiting for an assessment on our 4yr old son, the gp and his school have both made a referal but i'm told the waiting list is 6mths.

For the last yr-18mths his behaviour has been unusual and i have been passing it off as a 'phase' that he's going through but the phase doesn't seem to be ending, if anything it's getting worse.

He has been biting at school, we got him a chew toy and this has now stopped, he kicks and hits the other children and gets right intheir faces and shouts/screams. I have a meeting on Wednesday with his teacher and the SENCO which i am a little nervous about!

When he's at home he's constantly not listening and generally doing the opposite of what he is asked, he punches me, spits in my face, purposefully hurts people, screams/shouts, throws things, dramas getting him to sleep at bedtime and he wakes from 4am,  one minute he's tell me he hates me and the next he's sobbing. He gets so angry, doesn't seem to be able to regulate his emotions. He also rocks and bites himself and makes random noises.

He is hard work at the moment, tiring and I hope that we get some answers soon and support on how to deal with him.

I don't want him to have a label but I think that there it will help him to get the support he needs and for people to understnad him.

I think it is going to be a long journey but I hope it is a productive one.

Hi kittycath,

I am just starting the diagnosis process for my 4 year old daughter. My son is already diagnosed as autistic, as have I. My son now attends a special school and is thriving - despite missing a year of school he is now back on target for his age. Having a diagnosis has meant that he gets the right support, in the right environment by people who consider his individual needs (which mainstream education never did).

It is understandable to feel upset, like something is changing or being taken away. But your son will still be the same boy as he is today and always has been. Nothing is changing but you are potentially getting the chance to understand him better.

Whilst it makes things difficult, autism isn't necessarily the end of the world. A lot of people with autism can go on and have independent and fulfilling lives. Many on this forum were diagnosed later in life (myself included) and have had what could be considered "success" in life.