Subscriber OnlyYour Family

‘Our daughter blames us for not realising years ago that she was autistic’

Ask the Expert: She was diagnosed recently, aged 23. We did our best as struggling parents, but sometimes we did mess up and shout at her

'We had no idea that her meltdowns and anxiety were attributable to autism.' Photograph: iStock

My daughter is 23 and doing her master’s in college. We had difficult teenage years with her, which involved extreme anxiety about school, self-harm (thankfully short-lived) and intense meltdowns.

We attended CAMHS (HSE’s Child and Adolescent Mental Health Services) a few times, but she did not like this. She was much happier in college, where she really liked her course and seemed to find a good group of friends.

About six months ago after attending therapy she got a diagnosis of autism and this has been a revelation to her. However, it has also meant she has become much more angry at me and her father. In a nutshell, she feels that we failed her by not recognising she was autistic as a child and that we made her life a misery pressurising her about school and CAMHS and not understanding her. Being honest, we had no idea that her meltdowns and anxiety were attributable to autism and they never mentioned this the few times we went to CAMHS. We were doing our best as struggling parents and sometimes we did mess up and shout and yell at her.

Now she has cut off from us and our relationship with her feels strained. She does live at home, but avoids talking to us and spends her life outside (after teenage years of being stuck in her room). She is doing all she can to make plans to move out, but the cost of rent is against her.

READ MORE

We try to explain to her how we did our best, but this does not seem to be helping. What can we do?

Autism in girls and young women is under recognised in mental health assessments and service delivery. Many serious mental health challenges such as anxiety, eating disorders, and self-harm mask misunderstood and unmet autistic needs. Though, in recent years, there has been increased awareness of the experiences of autistic women, mainly thanks to adult autistic advocates who share their stories in memoirs and social media, there is a still a long way to go. This has led to many autistic teenagers, not receiving the supports they need and sometimes they have been prescribed treatments that have made matters worse for them. For example, strict behavioural approaches may aggravate anxiety or meltdowns when these are caused by unaddressed sensory needs or when the child is pushed into an environment where they feel agitated or threatened.

It is important to say that this misunderstanding is not primarily your fault as parents. Professional mental health services should have been there to help you understand your daughter’s needs and until recently much of the standard professional advice to parents did not work for many (often undiagnosed) autistic children. The good news is that things are changing and many mental health services are trying to be more neuro-affirming. It is great that your daughter has found a better self-understanding through her therapy and identification as autistic. Hopefully this will help her better understand her needs and be able to articulate them to others. As she goes through this therapeutic journey it is understandable that your daughter might feel angry at what happened to her in the past and to direct some of this anger towards you as her parents. As a young adult, it is also normal for her to be individuating and wanting to strike out on her own and have her own space from you as parents.

Adulthood autism diagnoses: ‘It’s just nice to finally know why I was always on the outside of all the groups at school’Opens in new window ]

Listen and be nondefensive

In trying to navigate this journey with her, it is important to listen and be non-defensive. Don’t immediately focus on explaining your perspective and how you did your best and instead focus on listening to everything she has been through. Let her tell you in detail about her experiences, her pain and how she was let down. Be brave enough to accept your partial responsibility in all of this and to offer an apology for how she was treated. Adopting this open-hearted, listening approach with her will help heal your relationship and create a better understanding between you.

If communication is difficult at the moment, you could try to start this conversation by writing or emailing her. You could start with stating your love for her, and offering an apology for what happened to her as well as stating your desire to heal things between you and to get to know her as adult woman. The written form can give you scope to carefully communicate what you want to say and to explain where you are coming from in an open and nondefensive way.

Find out more about the autistic experience

Take time to find out more and read up about autism and the autistic experience for young women. There are many excellent podcasts such The Neurodivergent Woman and The Neurodiversity Podcast and great memoirs such as Strong Female Character by Fern Brady or Odd Girl Out by Laura James. Better still, ask you daughter for recommendations about what to read or listen to. She may be able to recommend resources and books that have helped her, which will really help your understanding of her.

Seek your own support

Do reach out and seek your own support as parents. There are many communities online for parents of autistic young people and also individual counsellors who are neuro-affirming and understanding of the perspective of parents. As you do seek support, remember that autism and other neurodivergent conditions are inherited through families and much more common than previously thought.

It is worth reflecting about what qualities you, her father and other family members might share with your daughter. This could open several personal journeys in the family which will hopefully help you better understand each other and be better connected in the long term.

  • John Sharry is clinical director of the Parents Plus Charity and an adjunct professor at the UCD School of Psychology. He is running a series of ‘Parenting neurodivergent children’ courses starting October 1st. solutiontalk.ie