“I never really understood what autism was. Now, I'm in this whole new world with a new understanding of words, acronyms and behaviours.”
Niall MacMillan
– on navigating his son’s autism diagnosis.
We caught up with Niall MacMillan, a social media content creator and father of three children, including an autistic son, Ellison. Niall spoke to us about Ellison’s recent autism diagnosis and his experiences in raising an autistic child, as well as his own passion for content creation.
When did you first know or start to think that Ellison was autistic?
We first noticed during lockdown. We had two kids already, so we knew what to expect. Things were quite normal and what we were used to, until we noticed Ellison’s development come to a sudden stop. Any communication or babbling just seemed to disappear; he would even silently cry.
These were strange times during his development with Covid-19 and lockdown. As we weren’t allowed out to socialise, I naturally assumed that “well, maybe he's a ‘lockdown baby’". Luckily, my wife continued to pursue things further and sought an autism diagnosis.
Now Ellison is aged four, most of our communication is hand guided. Ellison also struggles with transitions and doesn’t handle change very well. Overnight stays or crowded spaces can also be a lot for Ellison: it’s almost like he is fine on the day but he tends to have a bad day the following day. Ellison is very happy in his own little world; he doesn't interact with other people or children often, even his brother and sister.
These were strange times during Ellison’s development with Covid-19 and lockdown. As we weren’t allowed out to socialise, I naturally assumed that “well, maybe he's a ‘lockdown baby’". Luckily, my wife continued to pursue things further and sought an autism diagnosis.
What was the process of getting an autism diagnosis for Ellison like for your family?
We read that most people really struggle with getting the diagnosis. But we've actually been really lucky, as Ellison was diagnosed within a year of us raising things. He was referred by the health visitor after concerns during his two-year progress check. Ellison’s paediatrician was fantastic: he was fast-tracked for an ADOS (Autism Diagnostic Observation Schedule) assessment which got us our diagnosis. I think what helped us is that we started the process as early as possible. Once again, all credit goes to my wife for this.
What does Ellison being autistic mean for your family?
As parents of two non-autistic kids, raising an autistic child is an entirely different challenge. We all work together to help manage day-to-day, but there certainly is guilt from us as parents that the way we raise Ellison is different to our other kids. Ellison does take up a lot more of our attention and there are a lot of things and experiences we refrain from doing, but the kids are so supportive and understanding.
Our extended family have all learnt on this journey as well and continue to support us, which really helps. We know what works and what doesn't and we've all found a level of patience that we never had before.
Since Ellison’s diagnosis, have there been things you’ve learned about autism which you didn’t know before?
So many! I never really understood what autism was. I always got confused with autism, ADHD, Asperger syndrome… They all begin with ‘A’! Now, I'm in this whole new world with a new understanding of words, acronyms and behaviours. I now fully understand what a sensory overload is, ways of communicating without words, and that there are so many senses that can affect a child's state.
Ellison will be starting at a mainstream school in September. How has the schooling process been going for him, and for you and your partner, so far?
Ellison’s pre-school have been absolutely fantastic. They have been so supportive of Ellison on his journey towards an EHCP (education, health and care plan) – again, another thing I never knew about before – writing up reports, ensuring we get the right support and speaking to the right people. We're still in the early stages of our EHCP and have heard about how much of a battle it is to get. We have prepared ourselves to fight to get Ellison the support he needs.
We are concerned about Ellison going to mainstream school as we think he will see this environment as challenging. Other kids will want to interact and play, and Ellison essentially has no desire to interact with anyone. As with anything though, you never really know until they're going through it. He could thrive from the structure and routine of school. It’s just a case of waiting to see how he gets on.
Can you tell us about how you got into content creation for social media?
From a young age, I've always had an itch to entertain people, to try to make people laugh. I suppressed and avoided this itch for whatever reason for so many years. But after getting married, buying a house and having three kids, I felt unfulfilled… not due to my wife and my kids, but because I wasn't pursuing what made me happy. What made me, me.
I went on a self-development journey and worked on my mindset for a few years. I came to the realisation that I had this itch and it was important to scratch it. Posting a creative video on social media every day with the desire to entertain is essentially me scratching that itch.
Everyone has a little something about themselves that makes them happy, that makes them feel fulfilled. I strongly recommend that you celebrate it and ensure you have that 'you' time, regardless of your situation.
Can you summarise what your content is usually about and any content you’ve created that you’re particularly proud of?
My content involves a character who finds himself in very uncomfortable viral videos. The thing I'm most proud of about it is I always try to provide content with heart and a good energy. I want people to feel happier after 15-60 seconds, to feel all warm and fuzzy. I get a lot of messages of people letting me know that they've had a bad day or week and I've offered them a little moment of escape. This is most rewarding part of the content I create.
While the social media character effectively communicates through facial expressions alone, it is important to note that the character isn't autistic. In the videos, the character doesn’t speak and by coincidence, this is also how Ellison and I communicate.
Please can you tell us what autism acceptance means to you?
Autism acceptance to me is raising people’s awareness so autism is more universally understood. Just because someone sees the word differently to me, it doesn't mean it should be seen as a disadvantage. I almost see it as autistic people often have abilities that most neurotypical people don't have.
Although you and your family are still very early on in your autism journey, what are your hopes for Ellison in the future?
The main thing for us is that he is able to feel safe in the world. We want him to live as fulfilled a life as possible. He is a very happy boy. That’s all you can every dream of for your child; we just want to be able to offer him this as he gets older as well. We will continue to work to ensure he gets all the support he needs to achieve this.
What is one thing you would like more people to understand about autism?
People without an understanding of autism can be quick to judge. Before we knew that Ellison was autistic, I remember seeing kids having tantrums, and you just think they’re a ‘naughty kid’. I often think back and feel awful about how quick to judge I was. This was all due to a lack of understanding.
I’d just like for people to take that extra second to appreciate that the family and child could be going through something that isn't necessarily obvious to you.
Autism acceptance to me is raising people’s awareness so autism is more universally understood. Just because someone sees the word differently to me, it doesn't mean it should be seen as a disadvantage.
Find out more:
- Watch Niall’s videos at @niallmacmillan.
- Our EarlyBird, EarlyBird Plus and Teen Life programmes offer support to parents and carers of autistic children.
- Read more Stories from the Spectrum here.