Autism – Our Journey To A Diagnosis

This post will be centred around our personal journey. Whether our journey is similar to others on the same path, I simply do not know. This post will not contain any advice, only what we personally have been through. If you have any concerns about your little one, always contact your GP first for advice.

So, it is official – our little boy has autism spectrum disorder. We received the official diagnosis a few days ago. For those who know us personally, I don’t think this news has come as a massive shock.

What Started Us On This Journey?

As a baby, we had no concerns about Little J whatsoever. He was your ‘typical’ baby – whatever that means. He wasn’t overly grizzly or fussy and slept as well as any other breastfed baby – waking up every 3 to 4 hours overnight.

It was only when Little J was approximately 18 months old that we noticed a change in his behaviour. Suddenly EVERYTHING was a massive drama. I wrote about how hard parenting had become around that time, but I just thought that it was typical toddler behaviour, that he was just testing his boundaries.

It was at this time that he also became quite aggressive. If he couldn’t get his own way, he would stamp his feet, hit, scratch, and headbutt us. He would pull my hair and even pulled hard on his dad’s beard once.

Little J had also begun to headbutt the walls and doors. He only did this when he was annoyed or couldn’t get his own way.

This could have all just been typical toddler behaviour. We spoke to our health visitor and got lots of advice. We regularly kept in contact with our health visitor during this time, and she would often give us a call to see how we were getting on and offer support.

Then Lockdown Happened

Lockdown caused us (like millions of other people!) lots and LOTS of problems. You can read about it in my post, The Terrible Two’s, Lockdown & Me.

Little J’s bad behaviour got even worse. He completely ramped up the headbanging to an alarming rate, he stopped napping, and bedtimes became a nightmare. He also stopped eating most foods, apart from Chicken nuggets, smiley faces, sausages and cereal. I cannot count the number of times he completely refused his meal and would go to bed after only eating cereal.

It got to the point with Little J’s headbanging and aggressive temper tantrums that we decided to speak to the GP. The Health Visitor had given us so much advice, but nothing was helping, unfortunately. It wasn’t fair on us, and it wasn’t fair on Little J either.

We didn’t get an appointment with the GP. Instead, I was asked to fill in a form with all of our concerns, and a GP would look over it and advise the next steps, if applicable.

Speech and Hearing

I believe that it was also around this time (sorry for the vagueness, it’s difficult to keep track of the timeline!) that we were referred to have Little J’s hearing tested. He was much behind others of his age in his speech and language, so he had a hearing test. Unfortunately, we had a very long wait due to being in lockdown. I believe that the waiting time was usually approximately four months; however, they were around five months behind schedule because of lockdown.

Once he had the appointment, it was apparent that he had no issues regarding his hearing. He absolutely smashed it.

Although this was great news, it meant that we were back to square one. The hearing test had given us no answers.

We were still in contact with our Health Visitor, and she chased up the GP for us and referred Little J for speech therapy. She also had Little J referred to Portage.

He understood basic instructions but would not use many words. He could only say basic words: mum, dad, car, ball. Whenever we would try and teach Little J any words, he would growl at us and become aggressive.

Meeting The Paediatrician

Eventually, in June or July 2021, Little J had an appointment to meet the Paediatrician. I already had an appointment that day, so it was down to dad to take him. It was an absolute nightmare! Little J screamed, cried and threw a tantrum the whole time. The doctor was unable to assess Little J properly, and the appointment was cut short. Poor dad and Little J!

That September, Little J started nursery. If anything, this just highlighted the language barrier and behavioural difference between Little J and his peers. In October, the Paediatrician observed Little J in his nursery and called us with a quick update.

By now, Little J had had his first speech therapy appointment (virtually), and we were given ideas on how to help him improve his speech. In January, Little J had his second Speech therapy appointment, and she could not believe the improvement in his speech!

Early Years Autism Assessment

In February 2022, we had a call with the Early Years Autism Assessment team. We thought they were going to ask for some more examples and evidence of Little J’s behaviour, but instead, they were confirming his Autism diagnosis.

It was a very strange moment. Both happy and sad at the same time.

I’m happy that we finally have an answer to Little J’s challenging behaviour. We now understand why he reacts the way he does to certain situations. We can learn skills to help him cope.

But I also do feel a little sad. Life is hard. It’s really hard. Autism impacts communication, social skills, relationships, and self-regulation, which means that life will be just that little bit harder for our fun-loving, Thomas obsessed, affectionate, silly little boy.

Although life isn’t too different for him at the moment, like any parent, I do worry about him going to school and how he’s going to cope. But his dad and I will always be there for him, to give him a kiss and a cuddle and help him as much as we possibly can.

Conclusion

I can honestly say that I have felt supported and, mostly, well informed throughout this entire process. I feel incredibly fortunate that the doctors and everyone have listened to us and taken our concerns seriously and that we were able to get this diagnosis before Little J starts school.

Unfortunately, I know that this isn’t the case for everyone, and if you are currently going through the process of trying to get an autism diagnosis right now, please know that I am sending you all the love and support in the world. If you need to talk, please do drop me a message, and I’ll be happy to chat with you.