The short answer to this question as far as I’m concerned is yes. He doesn’t have a diagnosis yet and may not have one for many years due to the waiting list and backlog for mental health services in our area. This is similar across the UK. He’s now 12 and we had him referred just after he turned 12. The reason I’ve waited so long despite suspecting Autism for many years is that he seemed to be managing OK in school and his social groups (mostly) and I felt he didn’t need a label. In retrospect, I wish I’d asked for a referral a long time ago so that support was in place now.
I’ve always suspected Autism on a ‘mild’ scale, since early childhood. I know now that there’s no such thing as mild or severe Autism, you either have it or you don’t, it’s just how much support you may need. William was a ‘normal’ baby and toddler, he had a lot of tantrums and needed a lot of attention, but don’t most 2-4 year olds? Looking back I can’t really tell. My second child, Phoebe, was very good-natured in comparison and played independently. I don’t know whether that’s just how she is or because we had to give so much attention to William that she just learned to fend for herself. His speech was late to develop and we were referred to speech therapy. Once there, they said that he was doing all the right things in regards to speech development, and he was just a late bloomer. I was pretty much the only one who could understand him until he started school. We went to baby signing classes early on and he was a fan of Mr. Tumble (he uses signing in his TV shows) and it turned out really helpful for us, we used a few key signs and it helped so much with communication. His birthday is in August so he had to start school at just turned 4. He was also premature, born 8 weeks early at 32 weeks. I always felt this had a factor.
Once he started school he struggled, he was put into an after school session once a week called BEAM that was designed to work on their motor skills. He had some extra help in class, but on the whole, he wasn’t the worst in the class and there were others in the same boat. He seemed to catch up and had only minor help. We decided to put him in for the 11+ exam, which here in Kent assesses them for Grammar school. We didn’t coach him through it and he failed on a couple of points. We didn’t want him to struggle so we didn’t appeal and opted for a normal secondary school. We were lucky and a brand new school was available concentrating on STEM subjects along with everything else.
He’s always been a bit germ averse and didn’t like messy play or arts and crafts, this has got more pronounced as he’s got older. Now, he won’t eat something that his siblings have touched (it’s OK if it’s just me but not if I’ve taken a bite out of it) and he’s funny about certain textures. He has lots of stims (see here for information about stims and stimming) like repeating words he finds fun to say, shifting his weight from side to side, drumming on the table, or making beeping noises. He doesn’t like lots of noise, or lots of different sounds together. He often has an uncontrollable response like the minute his brother (who is loud and hyper!) comes in and makes a noise he tells them to Shutup. He takes things literally and seriously, I often feel like I am walking on eggshells when I talk to him, he can take offense really easily at something I say or if I laugh. I can’t always control a laughter response and he thinks I am laughing at him in a mean way when really I’m not.
Another reason I waited to refer him is that he seemed to be managing OK. This changed when he went to secondary school. It’s a big transition anyway, and throw Covid into the mix and you’ve got a recipe for disaster. His first year wasn’t too bad, and some of that was virtual anyway. He never particularly liked school, he didn’t like going to primary school either. This second year has been the biggest struggle. Every day when I go to wake him up, the minute he opens his eyes he starts getting upset and doesn’t want to go. I have to do it stage by stage and it breaks my heart. He struggles with getting dressed, I have to make it into a game or challenge to help him, and lay his clothes out for him otherwise, he gets overwhelmed and doesn’t know where his clothes are. We have to prompt him to do his teeth. Although that’s the same with the others and many children I think!
Once in school, he struggles with the noise, he says it’s too loud. I have bought him some Loop earplugs, they are very discreet and don’t block all noise, but they do dull it down and are perfect for those with sensory issues. I got him the standard size and they come with different sized earpieces so you can fit them to their ear. They do child versions too. He lost the first pair – the case is quite small – but the second pair we attached to a lanyard he wears around his neck. The school is fine with it. I had to have a meeting with the head of year and the SEN leader a couple of months ago and outlined my concerns. He says he finds all the lessons hard and doesn’t feel like he can ask for help because it’s already been explained twice. He was getting lots of ‘homework catch-ups,’ which to me are a bit like detention, they’re after school and take precedence over clubs, which he has twice a week. This was because he was really struggling to do homework at home, we didn’t know what homework he had and he was only remembering at 9 pm at night which was no good to anyone.
Now we have put in place that he goes to Granny’s house 2 days a week to do homework and have dinner. This has taken a great deal of stress off us and him, he has time and space to do his homework. He struggled with the fact that his home was a safe place, and not a place for homework. He also had trouble starting the task. We had so many arguments over homework we were both so stressed by it. I felt like I was just doing it for him, dictating for him what to write because he didn’t know what to write. I’m so grateful my family is able to help us. The school put together a homework club, which may come in handy for the future.
The school has also referred him to the educational psychologist to talk to and maybe get a diagnosis for him, but so far this hasn’t happened. They are very supportive, but can only do so much. I did have to email several times and meet with them, followed by follow-up emails to get the results I felt he needed. Yes, I am that annoying parent! He still struggles to get up and go to school every day, and on Sundays, he has anxiety about school. I wish I could take it away for him.
Socially he struggles, he doesn’t have many friends, his closest person is actually his female cousins, unfortunately, they live quite far away. He has a couple of friends at school but he can easily take things the wrong way and I think his little oddities can be offputting for some. He doesn’t have a ‘best’ friend as such. He is a rule follower, which I like because I know I can trust him, he is quite black and white about a lot of things. In some ways, he is young for his age, but in others, he can be quite mature and sensible. He can be great company or the most annoying person! He gets passionate about his special interests which are mostly computer game-related, and he loves to explain to me in detail about the techniques and finer points… I must admit I switch off at times. He doesn’t always know when it’s his turn to speak, and he finds it difficult to know when to interject – sometimes he puts his hand up to speak instead, or he interrupts inappropriately. Sometimes he waits far too long to ask something if I’m talking to someone else, like if he needs a drink or the toilet. He gets scared about a lot of things and will have a knee-jerk reaction.
A lot of his quirks and stims he reserves just for us – he masks it all when we’re in the company of others, even family, and of course at school. This means people don’t believe me or are really surprised when I tell them all I’ve told you. Having done a lot of research about Autism and ADHD and thanks to a friend of mine whose daughter has Autism and PDA I can be an advocate for him.
When I have told family or friends about my suspicions and what we are doing for him, they often respond with a surprised reaction and an air of sadness, like I should be sad, like it’s an illness. The thing is, it’s still him, he’s still the same, nothing’s changed. Yes, he may struggle more socially and need some support in life, but he’s still the same funny, thoughtful, intelligent, kind boy that we all love. Having a diagnosis of Autism and ADHD will be helpful for him, and I see it as a positive, not everyone thinks the same way, and if we did that would be boring. I’m proud of who is and I can see a great future for him.