Psychotherapist’s guide for parents navigating a neurodivergence diagnosis
When a child receives a neurodivergence diagnosis, parents often face a challenging emotional transition, balancing the need to process their own feelings with the immediate demands of caregiving.
While there are supports available for neurodivergent children, psychotherapist Fiona Hall spoke to Dublin Live about how little there is for parents who must come to grips with a new reality that takes into account the seriousness of their child’s diagnosis. Whether it’s autism, ADHD, or other kinds of neurodivergence, the impact on families can be immense, leaving many to navigate a complex grieving process without a clear roadmap.
As part of Autism Awareness Month this April, Fiona has come together with Dublin City Libraries to deliver her ‘Parenting with Confidence: The Process of Coping with your Child's Neurodivergent Diagnosis’ workshops. As an accredited psychotherapist with over ten years experience and as a mother to a neurodivergent teen herself, Fiona is guiding parents and caregivers through the often unspoken difficulties of this journey.
Fiona highlights the impact of the ‘five stages of grief’ while giving practical advice on sibling dynamics, marriage, school, as well as the free services offered by Dublin City Libraries . By shifting perspectives away from outdated ideas of ‘fixing’ a child toward understanding their unique lens o]n the world, she provides a framework to move beyond the initial shock toward ultimate acceptance.
One of the first things parents should understand is that a diagnosis is a tool of understanding and doesn’t change anything about a child themselves. While confirmation of neurodivergence might send some parents into an emotional tailspin, their child remains the same person as before the diagnosis.
“The child has not changed, what happens is we as parents start changing our whole outlook,” Fiona explained. “When we are pregnant a lot of parents kind of fantasise and dream about the life their child is going to have. That’s all perfectly normal, every parent does that.
“Then developmental delays start appearing, they go through to the process of getting a diagnosis, and it feels like their world is falling apart. But, the key thing they are missing is that the child has not changed.”
The difficulties of a diagnosis often relate to the new information parents are gaining, rather than change in their child’s behaviour. “Thinking something is very different to being handed a piece of paper with a diagnosis on it,” she said.
However, Fiona stresses that every child is different “regardless of a label” and while parents may struggle when they feel overwhelmed about the loss of an imagined future, with time they find their footing. Although parents may go through the “emotional wringer,” Fiona says “the acceptance piece is the easiest of the lot” once the initial shock has been processed.
The five stages of grief are a psychological framework to understand complex emotions surrounding loss. With unexpected life changes, Fiona explained that parents will find themselves dealing with feelings of denial, anger, bargaining, sadness and acceptance, and not necessarily in that order.
“It’s not a linear process. One parent could be in denial, another parent could go straight for anger. It is about knowing that these are very common emotions, and it is okay to feel these emotions,” she said.
Because of this natural process, Fiona believes parents shouldn’t make any rash decisions within the first six months of receiving a diagnosis. Although some caregivers might consider giving up their job to look after their child full-time or even moving somewhere new where there are more support services, often they are not in the right headspace to upend their lives and it’s better to be careful about big life changes when coming to terms with this new information.
Going through these emotions is normal, with Fiona saying people in denial often seek out a second, third, or even fourth opinion on their child’s diagnosis. “They are constantly Googling situations, trying to fix things, make them better, or go away - whatever answer they are looking for, they are not going to find it,” she said.
People are right to be angry, Fiona says, as a shortage of support services in Ireland means parents are often thrown into a situation where they must fight to advocate for their children for everything from school places to SNAs . However, Fiona states acceptance will prevail, and, after parents have passed through these stages, the child will know their parents have their back.
One big question parents must confront when they receive a diagnosis is how open they want to be about their child’s neurodivergence to the rest of the world. Although some parents might be wary, Fiona says having people to rely on who understand the child’s needs is a major help.
“Personally I would be a fan of disclosing because it can be really helpful when the family and their friends know,” she said. Whether it’s organising playdates or sleepovers, the child’s extra needs can more easily be taken into account when everyone understands the full picture.
While understanding has increased and stigma has reduced in recent years, Fiona explained some parents opt to keep the diagnosis hidden, even from their own child. “In my experience of working with parents and also speaking to SNAs and teachers, the older the child gets, they know they're different,” Fiona said.
“The way I look at it is, if I was brought to a number of different medical appointments and assessments, and nobody told me why, that would be a worry in the back of my mind.
“When children know and understand then it’s their choice whether to tell friends, but I think owning who they are can be very helpful for a child to make sense of the world through the lens they are seeing it.”
One thing families should know is that appropriately addressing neurodivergence can have a profound impact not just on parents and the child, but on siblings, family dynamics, and even a marriage. Having a child with additional needs can often overtake other responsibilities, and without properly traversing these changes, resentment can build.
“In my experience over the last 10 years, partners don't discuss their parenting strategy when they have a family,” Fiona said. This lack of unity can compound difficulties with the extra strain of neurodivergent diagnosis.
Fiona said that not every marriage can handle these difficulties and that people shouldn’t be afraid to seek counselling, either as a couple or separately, when things get hard. Ensuring that neurotypical siblings' needs are also being met can cause difficulties for parents struggling to come to terms with a diagnosis.
Difficulties for siblings can often be feelings of not being “seen or heard” and Fiona stresses parents should be mindful that, following a diagnosis, brothers and sisters must also come to terms with their world changing. Children often put great value on fairness and without being open with them about the extra needs of neurodivergent siblings they can start feeling like their own needs are being side-lined.
“It’s like if you brought home a bag of sweets to be divided three ways. You can bet those kids will count out those jellies until the very last one to make sure that everyone got fair dibs,” she said.
“They’re so perceptive around what’s fair. The same thing can happen with so much attention being given to the other child. You have to make the effort to have those really open conversations that maybe one child needs a little bit of extra attention, but it’s not about how much anybody cares.”
They say it takes a village to raise a child and this is definitely the case when it comes to addressing the additional needs of a neurodivergent child. Fiona says it’s important that parents work collaboratively with schools and ensure everyone is on the same page about the child’s needs.
This brings back the topic of disclosing a child’s diagnosis, with Fiona saying some parents are worried about potential bullying if they are too open about it. But she pointed out that schoolchildren can face bullying for something as simple as wearing the wrong shoes and the support system offered by teachers, principals, and even classmates being in the know shouldn’t be underestimated.
Navigating the challenges of school is difficult for everybody and Fiona says that parents should be mindful their child will likely act differently in a classroom of 30 pupils than they do at home. “That’s why it’s important to have that collaboration with the school where possible,” she said.
“That way if there's anything big going on at home you can let the school know, and vice versa if there are any struggles with personalities because none of us are the same person in work as we are at home, we have different ways of operations."
One area that Dublin City Libraries have really excelled in recent years is its autism support services, with Fiona highlighting just how much they offer for neurodivergent people. With the goal of making both their digital and physical spaces autism and neurodivergent friendly, there are even sensory supports that people can borrow for free.
Whether it’s ear defenders or sensory toys, these supports will offer the parents of neurodivergent children a chance to ‘try before you buy’ and discover what items they will benefit most from without being first confronted with a lofty price tag.
One of their most impressive offerings is the sensory Cubbie, which can be found in the Central Library, Ballyfermot Library, Cabra Library, Coolock Library and Walkinstown Library. The sensory Cubbies are aimed at people with sensory processing disorders. The Cubbies offer a sensory management system for both children and adults with programmes lasting five to 15 minutes and consisting of colours, images and music.
Fiona’s next ‘Parenting with Confidence: The Process of Coping with your Child's Neurodivergent Diagnosis’ workshop takes place in Ballymun Library on Wednesday 22 April at 6.30pm, advanced book is advised.
For more information visit www.dublincity.ie or follow Fiona Hall on socials @consciouslyclearing.
This content is funded by the Local Democracy Reporting Scheme