In 2016, our eldest son was 5 years old, and we started noticing he was rather hyperactive and he lacked concentration. But being as he was only 5, and our first child, we thought this was just normal behaviour.
Late 2017, we noticed that he lacked major danger awareness skills that you would expect a child of his age to have. We went on our first family holiday, and he walked out into a road without looking, years we’d been teaching him to stop, look both ways, but he just had no idea. We went to a water park, and whilst my husband was sorting out our middle son, I was blowing our eldest son’s armbands up, when he ran off and jumped into the deep end of the pool. I don’t need to explain how scary this was. No one even thought to help, luckily my husband was able to jump into the pool and get him out, whilst people stood and sat around staring.
Moving on to late 2017/early 2018, he became rather aggressive, raising his fists at me and screaming uncontrollably if he couldn’t get his own way, or if we had to go somewhere or do something he didn’t want to do, or that wasn’t planned with him knowing. This became almost a daily occurrence.
I finally broke down to one of my closest friends, and said I couldn’t handle his behaviour anymore. She advised me to call our GP urgently to try and get him some help. Within 24 hours I had a call from CAMHS. I explained everything and was told they would be sending us some questionnaires about our son, one to us and one to school. I decided to speak with his school and teachers about what we’d be experiencing and ask what he was like in school. They said he was fine, but this was the case of fizzy pop bottle “being shaken up all day and then when he comes home, BANG”.
In 2018, we saw his paediatrician, and he got diagnosed with ADHD. His paediatrician asked us if autism was in our family at all because he was also displaying autistic characteristics, but because no one in the family had autism (or so we thought) he didn’t diagnose it and said it was something we could explore at a later date.
He had started to really struggle at school, he couldn’t sit down to do his work, he had to stand, and he was being disruptive. Home life felt like a constant battle. He had also started getting motor tics (excessive hard blinking, neck twitches, face twitches, clicking his fingers, whistling tics, clearing his throat tics) which we found really hard to witness because you could see they were sometimes hurting our son and they looked so exhausting to him. And it was scary, as initially we didn’t know what they were.
In 2019, he was put on his first lot of medication, but sadly due to side effects, he had to come off of them. And then the world was thrown into lockdown a few months later. Our follow up appointments were all cancelled and just as we had started getting help and support, it just stopped.
We finally saw a new paediatrician in 2021, who was absolutely horrendous if I’m honest. We’d never seen her before, but she clearly didn’t care enough to look at her patients notes on diagnosis or care plans. We explained that since our last appointment, we had found out that my dad is autistic which would back up the autism diagnosis from the previous appointment in 2019, that we needed to try our son on a different medication because his motor tics were getting so bad, as was his concentration levels and lack of danger awareness. She refused and said she didn’t agree with the ADHD diagnosis and said there was nothing more she could do for our son.
I contacted our GP again and explained I wanted to see someone different. He wrote to them and we were told to wait for an appointment. Due to covid, and the waiting list times, I didn’t rush to contact him when no appointments came through or no calls, but eventually I called our GP again and was told “we had fallen through the cracks”.
In August 2022, our son and I attended an appointment, with a new paediatrician who was absolutely incredible! She had similar conditions to our son, and could relate to him so well. She put him on a new medication which has been fantastic but we have started noticing the tics have come back a bit. No where near as bad as before. She is almost certain he has autism and now on a long waiting list for an assessment for that. His behaviour at home is so much better and he seems so much more mature and relaxed on this medication. He’s concentrating so much better at school now as well.
One thing that was bought to our attention with our last appointment, was a lot of questions she asked our eldest son, he would say “yes and my middle brother does this too”, to which I agreed. She wants us to get out middle son assessed as well for both ADHD and autism.
Invisibly Disabled Me 