Motherhood is a wild ride for anyone, but for women with children that have additional needs, it can be a lot more challenging. There’s the usual mental load – managing or co-managing the household, scheduling appointments, school diaries, running around to activities, parties etc. but on top of that there are the specialist appointments, therapy sessions, and ensuring the family has the right tools and support in place for a happy and functioning existence.
We spoke to one of our beloved clients to gain a glimpse into mum life and what parenting children with ASD and ADHD looks like.
Here is what she said….
Tell us about the family
My husband and I have twin daughters, aged 8. Both my daughters have ADHD in different forms. My older daughter (Sadie) has ADHD- Combined subtype, along with ASD requiring Level 2 support. In working through the process, we realised that our younger daughter (Lola) also had many of the symptoms of ADHD and we had overlooked it because of her sister’s more obvious symptoms. She has since been diagnosed with ADHD- Inattentive type.
My husband and I both work full-time in very demanding jobs. We often have to work late nights and early mornings and it feels like we spend most of our time coordinating calendars. Especially with Sadie’s ASD, we can’t rush anything or have unexpected changes in schedules. Then with ADHD, everything takes forever – I never knew it could take so long to put shoes on and get in the car with weather-appropriate clothes on!
Our family dynamic is pretty stressful, just trying to fit in everything. But we are really focused on having ADHD be a positive and creating an open environment for our kids to talk about it with us and their friends and to learn to advocate for themselves at school.
How did you know your child/ren had ADHD and/or ASD?
We always knew that Sadie had some form of ASD, since she was a baby, she was always hypersensitive to sounds and textures. She would have these extreme overreactions and be completely inconsolable. As she got older other signs started to become more obvious, particularly in social settings. We delayed her diagnosis due to Covid and as we were living overseas, and then there were the extreme wait times to get her assessed. So we were surprised by the ADHD diagnosis that was made at the same time as her ASD diagnosis when she was 7.
Sadie always knew she was different to other kids too. She created an alternate reality for herself where she was half-human, half-wolf to explain her issues with controlling her temper and to justify why she felt different from the other kids. She really loves that she has a name for that difference now. She tells everyone she has ADHD and ASD. We have always been really positive about ASD and ADHD giving her special gifts, and she is really thriving knowing this now.
For Lola, we are still in the early stages, but for her, it has also been a relief to better understand herself and her limitations. She knows that when she forgets something it’s not always her fault – she is very critical and suffers from a lot of the anxiety that can be common to girls with Inattentive-type ADHD, she strives for perfection, writes lists, and analyses everything she does to make sure it is correct. She is very critical of herself when she falls short of her ideals. So knowing why is actually a help for her.
What ADHD or ASD symptoms does your child/ren show?
Sadie’s ASD manifests as socially inappropriate behaviour, but very different to the stereotypes of ASD. She is inappropriately overly friendly. She hugs strangers, hands out our address and generally everyone she has spoken to for more than 30s is her BFF. She also has some compulsive fixations and engages in stimming in a variety of ways – she makes noises, pulls her hair, and she picks her fingers. She can be easily distracted, and then hyper-focused. She is always into some new thing, and she can get very fixated on video games which we have had to put extreme limits on or ban on occasion.
Lola is easily distracted. She can start the same task 10 times and never finish. She has 100 projects started, and all are half done, but I can’t get rid of any of them. At the same time has incredible drive and hyperfocus on things she enjoys. She will read a chapter book a night and does her homework in a minute. She loves school and is very driven to the point where she also suffers from anxiety trying to be perfect. She over-analyses small things and fixates on if people like her, trying to read into different things they said or did and work out what they mean.
What impact does it have on you/your family?
My husband in particular struggles with the way ADHD and ASD show in our household. He has difficulty himself with the stimming and the constant noises both our daughters engage in, and when they don’t appear to listen to him, or don’t do what they are asked he sees it as something personal directed at him.
He tries his best but probably has some form of undiagnosed ADHD himself. We often joke about this, as in learning more about ADHD we are realising we probably both have undiagnosed ADHD and accepting that has helped us to better understand our children and ourselves. It has been quite eye-opening for me to realise that the things my kids were experiencing, things that I thought were normal, were not actually the way everyone else saw the world.
It is still a challenge for me to manage to keep the household in a calm state, where everyone functions well when I am the only one who is able to remain calm and to keep track of where everyone is up to in a task, constantly gently remind and encourage and not get distracted myself.
It’s a huge mental load, especially with all of the specialist appointments, school activities, out-of-school activities and working full time. It’s pretty exhausting. I’m not always able to be the sort of mother I’d like to be as that mental load is never ending and quite intense.
It’s been hard on my marriage too because my husband and I are both tired all the time from all the responsibilities and extra tasks. Being a parent is tough at the best of times but throw in all the extra appointments and the mental load of keeping others on track, it’s almost impossible. When I get frustrated with his inability to do what needs to be done, it causes issues. I know he is struggling as well, and he does his best, but it does feel like it is always up to me.
What support systems do you have in place to help you manage day-to-day life with ADHD and ASD?
After living overseas, we moved back to Australia as we have a better family support system here. My husband is American, and my daughters were born there. Australia isn’t perfect, but the supports that are provided here are amazing compared to the US. We have NDIS funding for Sadie, but for Lola we are paying for it ourselves and using Medicare and Private Health Insurance for her anxiety and mental health issues. Sadie goes to Social Skills Classes at Freedom Social Skills, Occupational Therapy, and a psychologist. Lola sees a therapist for her anxiety and occasionally a psychologist for her ADHD.
I was intimidated by NDIS through the application process – it was intense especially as we were really setting up Sadie’s medical history from scratch as she wasn’t born here. But once we got it has been amazing. We self-manage and it is so easy. I can’t say enough good things about NDIS and Medicare. I know people have issues, but maybe it’s compared to what would have been on offer for us overseas.
How has Freedom Social Skills helped your family?
Sadie really enjoys the Social Skills Classes, and it has been of great benefit to her to have other children who she can identify with. It helps her be positive and it has meant she doesn’t feel alone.
Did you / do you feel supported in your journey as a parent to an ADHD child?
Not really. Some of the government support is great, but generally, my family doesn’t always get it, and I am constantly fighting with the school and trying to manage schedules and waitlists and I don’t feel like other parents or my friends without children with ADHD or other issues really understand. I think there is still a lot of stigma and this idea that it’s just undisciplined kids, or because of the way ADHD looks in girls that my daughters don’t have it and I’ve just jumped on the bandwagon.
I have been lucky in accidentally finding 2 other mums who have kids with similar issues, and although we are all in different areas and schools their support and understanding have made the world of difference.
What are your biggest pain points?
Leaving the house – I’m only half joking here. It’s probably getting support and understanding from the school. Or to even be taken seriously by some teachers, particularly those who still consider the stereotypical presentations of ADHD and ASD to be a reality.
What does daily life look like?
So busy. So many things to do. So many lists. Lists of lists. Calendar appointments. Reminders. Frustration that no matter how much we plan we are always late everywhere.
What advice would you give your younger self?
I’d tell my younger self to get diagnosed with ADHD! Many of the doctors we have spoken to have indicated that there is a hereditary component. The more I understand about ADHD and how it manifests in girls the more convinced I am that I would have benefited from this understanding and diagnosis and been happier myself. I consider myself a pretty successful adult – I have a great family, I run a national team for a global company, I’ve lived all over the world, and on the surface, I look pretty put together. I would tell my younger self that people with ADHD can be and do anything they want if they put in the effort, but with just a little bit of understanding from others, it could be a lot easier.
What recommendations would you give other parents whose children have ADHD?
ADHD is hard – but it isn’t a bad thing. It is real – you aren’t imagining it or making it up or jumping on the ADHD bandwagon. You aren’t a bad parent who if you just fed your child organic everything, never let them watch TV and had a stricter schedule they wouldn’t have these issues – you are a good parent and you are doing enough.
Names have been changed to protect the privacy of the contributing parties.
Understanding ADHD and Autism Spectrum Disorder. The Facts.
Attention Deficit Hyperactivity Disorder (ADHD) is the most prevalent neurodevelopmental disorder in Australia, affecting one in every 20 children, characterised by persistent patterns of inattentive, impulsive, and sometimes hyperactive behaviour, it is frequently accompanied by emotional regulation challenges.
Autism Spectrum disorder is prevalent in 1 in 70 Australians. It is a lifelong developmental condition characterised by difficulties in social interaction, communication, restricted and repetitive interests and behaviours, and sensory sensitivities. The spectrum is broad, and it presents differently in all persons.
The two conditions have many similarities and can often overlap however this is not always the case. It’s important that you always seek help and advice from a qualified healthcare provider. Your doctor or specialist can provide personalized guidance and treatment options tailored to your specific needs.
