Dublin mum Christine Sweetman Cullen says the 'pressure' put on parents of children with autism is huge

As Autism Awareness Day falls on April 2nd, those impacted by the services for people with autism are calling for change.

Christine Sweetman Cullen's son Tadhg, aged ten, is a person with autism, and she explained that one of the most difficult and frustrating aspects of raising a child with autism is that as a parent, you are expected to wear many hats when it comes to their care, as she has found difficulty accessing the services her child would benefit from.

Christine, an artist and hairdresser and mum of two, explains that she feels she has to take on the various therapeutic roles for her child that she wishes she could access professionally.

"I found that at the start, at the early intervention there were a lot of parenting groups, I was delighted to have gone to every last one of them. But as Tadhg has gotten older, I find he gets little to no help," she told RSVP Live.

"He has lovely therapists who ring and suggest things for us to try, but he does not get any one on one therapy. Before he was diagnosed, I was bringing him to a free walk-in speech clinic, and when I mentioned that it was suspected that he could have autism, we were told he could not come to the clinic any more as he would be on another system now."

"To this day, he has had two blocks of six weeks of speech therapy since he was about four or five.”

A Dublin mum and her son have been left amazed and 'forever grateful" after Dublin Buss pulled out all the stops to give them a huge surprise this week. — Christine Sweetman-Cullen and her son Tadhg as they embark on their surprise journey with Dublin Bus after school

She explained that the pressure on parents is huge, as they pivot to fill gaps left by limited access to services.

“There is a lot of pressure on the parents - ‘you teach him this, you are with him all the time, you are the best tutor for him’ - but you are always second guessing yourself," she said.

"All the courses taught me how to deal with things, but for the most part we have had to learn how to adapt and figure out how to be his speech therapist, how to be his occupational therapist, how to work in a way we can help him, you have to be all of the characters and play all the roles, and it’s so hard.”

"A bit of one on one speech therapy would go such a long way for him, but he hasn’t been given that service. He got an iPad with a speech device during Covid, and afterwards I was explaining that he knows all the words and is able to say them, he just struggles with putting them together in a sentence, we need to be able to move on to the next step now, I was just told to keep using the speech therapy app on the iPad.

"The app can’t help him express his emotions or tell me how his day was. It's so hard, knowing that anything could be happening to him and he wouldn’t be able to tell me."

"I had so many expectations of the help he was going to get, and in the end I even had to pull back from working full time because he needed so much help. I was under this misconception about the help that was available."

Despite the difficulties, Christine explains that her little boy has come so far and is learning new things every single day.

"I am so proud of his speech, it has come on so much, there isn't a word he cannot say, he just needs to learn how to use them in sentences and in context. This is a huge thing, because at one stage I thought he would never speak," she said.

"Even though he has overcome so much, we are always working on things with him. Also crossing the road, he used to dart out into the road but now he waits and stands beside me."

"He is getting better every single day, but there are always things to work on. He is so smart, he has an amazing memory, he has so many great traits. So many strengths, and he is learning all the time."

Dublin mum Christine Sweetman Cullen says the 'pressure' put on parents of children with autism is huge

"He taught himself how to read, how to write, he has memorised all the bus stop numbers from here into town, the serial numbers on all the buses and routes, and he memorised all the Sky TV channels. When Brexit came in, we lost some channels which I never would have realised, but Tadhg noticed they were gone and not in the right order.! He is amazing with numbers."

"He’s lovable, smiley and laughing all the time. How he has gotten to this point is down to me and his dad, his sister Brook and his teachers at school rather than being down to services.”

Christine notes that the siblings of children with autism are amazing, and deserve recognition.

"Autistic kid's sisters and brothers tend to take a lot of responsibility on as well, she would be like a second mammy, it melts your heart. But at the same time, she should not have to think that she can't do things because of her brother, or constantly be worrying after him. They don't get enough praise, those siblings that act like a second mammy or daddy, they take over almost as the second in line after the parents, they do so much. Without Brook we would be lost."

"Ive heard throughout my journey with autism, from other mothers I have met, they say the older siblings do so much more than anyone would realise."

When Christine and her husband first heard of Tadhg's diagnosis, she says they were scared and devastated but have learned to adapt.

"I was devastated. I thought ‘how are we going to help him? I don’t know how to do this.’ I was in complete denial at first, and you go through the stages to acceptance. We learned to accept it, and now I can see - Tadhg has autism but that is just one part of him.

"He is not defined by his autism, and it has also given him so many strengths. It has taken me a while to actually say that. It has just been part of him."

“Initially the diagnosis was really hard to get but after the initial shock, we learned how to cope and communicate with him, as he is non-verbal. He can’t tell you what he wants and gets frustrated. That was hard, but you go to parenting courses to learn how to interact with your child and how to talk to him without words.

"The biggest blessing for me with Tadhg having autism is that it has taught me so much, how to look at the world differently through his eyes, how to communicate without words, to cherish every word he says and it's given me strength I never thought I had to fight for everything he needs."

Get the latest RSVP headlines straight to your inbox for free by signing up to our newsletter

READ MORE: