Your child has been assessed for autism. Now what? Catherine Stone talks to the mothers of autistic children whose needs aren’t always obvious on a journey fraught with challenges.
Alison’s son, Oscar*, was four and a half when he was assessed.
“He was my first child, so I had nothing to compare his behaviours and development to,” she tells me. “He didn’t exhibit any of the traits she associated with autism. He was so sociable, he made eye contact. I really had no idea.”
In the years that followed, there would be numerous challenges. “Transitions were very turbulent. Anything to do with time was really hard. Getting out the door every day was challenging.” There were unrealistic demands. “He would have an idea in his head that he couldn’t deliver in reality, and that was very hard for him.” He often got into social conflicts with other children. “He couldn’t back down.” There were anger meltdowns. “He would go into the world and be sociable and charming, and then he would come home and fall apart. We learned that hunger and tiredness were triggers. Things would get broken, but really, he was overwhelmed with everything the day had thrown at him.”
The effect on her nervous system was profound. “I was on high alert the whole time. It would take ages to decompress.” However, by far the biggest challenge of all was managing the opinions of others. “I felt constantly gaslit. No one saw it. Lots of close friends and family didn’t believe he had autism at all. Everyone thought they knew best how I should handle it. I was always being pulled aside and told, ‘if that was my child… had I thought about a star chart?’ When in reality I had tried everything.”
Alison is not alone. With about one in twenty children now being diagnosed as autistic, the Department of Education has seen a threefold rise in less than a decade. For parents trying to meet their child’s unique set of needs, the wealth of information out there can be overwhelming and at times contradictory. Despite growing awareness, finding support isn’t always easy, either and varies considerably from county to county.
When Miriam Kenny’s son was diagnosed, support in her area of Dublin was so thin that she founded her own support group, Involve Autism (involveautism.ie), which has three pillars: support, advocacy and inclusion. Through focused local campaigning, working with schools, school patron bodies, and at the government level, Involve Autism has managed to establish several autism classes in local primary schools, where previously there was only one, some at second level, and a special school.
Everyone thought they knew best how I should handle it. I was always being pulled aside and told, ‘if that was my child... had I thought about a star chart?’ When in reality I had tried everything.
Now their support group offers parents the chance to validate each other’s experiences and swap valuable notes. The hot topic? Schools. For those like Alison whose children are coping academically but struggling socially and emotionally, mainstream schools are a mixed experience, with some moved by the level of support their children have received and others heartbroken at the lack of acknowledgement of their children’s often hidden needs. Audrey, 50, has an autistic son, aged 12. In school, he frequently gets into social conflicts. “He cannot see anyone else’s perspective.” The backlash has been horrific. “There has been name-calling, rumour-spreading and exclusion by his school peers.
The school says it’s not bullying, it’s unkindness, but I don’t know – what’s the difference?” She has distanced herself from other parents. “I’m too upset to talk to anyone anymore.” What advice does Miriam have for parents trying to advocate for their children in school settings? “It’s important to work in partnership with and develop a positive relationship with your child’s school,” says Miriam. “You have to understand the system before you try to navigate it. Figure out what internal and external supports can be accessed and work together to ensure your child is supported. Schools are stretched and really want to help, but are working in an under-resourced system. Education is a rights-based issue; be aware of pertinent Department of Education and school policies so that you can frame your discussions.
‘If things are difficult for your child, try to stay calm and leave your emotions at the door.’” For some mothers, there is guilt about speaking out at all. “My son didn’t want anyone to know he was autistic, so going into the school and talking to teachers about it was really hard,” says Alison. “Whenever I spoke about it, I had this weird sense I was betraying him.” This is all too familiar terrain for Jenny Tsagalas, a behavioural analyst and therapist with eighteen years’ experience supporting families and children.
Founder of Behaviour Solutions (behavioursolutions.ie), she gives one-to-one parenting consults, online and in person, with an emphasis on supporting parents of neurodivergent children. “I try to restore a parent’s well-being and sanity,” she says. “There can be so much gaslighting, and for a parent supporting an autistic child, there can be a sense that none of their experience connects, that they are living in a parallel universe.”
She helps parents see anger meltdowns from the child’s perspective. “When a child is having a meltdown, what they are really saying is that they are not able. The social disconnects stack up. They can’t draw from the past to predict the future; they cannot put things into context. I ask parents to look at the big picture, the deeper picture.”
With about one in twenty children now being diagnosed as autistic, the Department of Education has seen a threefold rise in less than a decade. For parents trying to meet their child’s unique set of needs the wealth of information out there can be overwhelming and at times contradictory.
She guides parents on how to help their children socially using concrete tools. “I direct parents to social behavioural maps, where they can sequence occasions, so they can give their children context. What’s expected of me in a certain social situation? What will I feel if I do x, y or z? What are the social consequences of each choice?”
For many mothers, it is the tween years that are most testing, as their children struggle to understand a neurotypical rulebook that is becoming more nuanced. “There are rules,” says Jenny, “but we also need to teach children the exceptions to these rules.” Alison went for counselling when her son went through this period. Now Oscar is 19, she looks back on her journey and appreciates the vital importance of self-care. “I went walking and did yoga. And I got away for the odd night. And I tried to do nice things with my son. To enjoy what he was good at.”
For her, one of the highlights of Oscar’s childhood was witnessing how intensely he followed his interests. “I did indulge them,” she says. “He loved music and art, and I really supported that – that’s one thing I feel I did right. We can get caught up in how our children don’t conform, but now that my son is grown up, he is an amazing young man, and I love the way he sees the world. I am so proud of him, and if I could turn back time, I would try not to always expect him to conform to the neurotypical world, but instead enjoy the journey of being a mother with a unique and amazing child.”
The children of the parents Jenny coaches are making progress. “There is hope,” she tells me. “Autistic children can decode the social rules. They catch up. And as a society, we are becoming more aware of differences. We can make allowances. In other words, we can build a relationship if we understand the child. When parents find their confidence, I see a reduction in stress levels and greater resilience. Implementing supports and strategies makes life more consistent and predictable. This leads to positive outcomes for both child and family.”
This article originally appeared in the Winter 2025 issue of IMAGE.
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