What advice would I give to parents and carers?

“I wish I had known all about the different presentations of autism, about masking and demand avoidance. Then I might have realised a lot earlier in my parenting journey that they were autistic.?Also, the strong hereditary links so that traits you the parent associate as normal you realise are possibly autistic traits - so just because you experience or did experience similar it doesn't mean everyone experiences that. The links between autism and poor mental health, and that you may see anxiety before you see any other traits. That you should trust your own instincts more and not believe that professionals necessarily know best.” Joanne Feaster, LinkedIn comment, January 2025

Recently, Jo Billington posed a question in a LinkedIn post: “To parents and carers of autistic children: what’s one piece of advice or information you wish you had known earlier in your parenting experience?”. The quote above was my response, and the comment received a lot of positive reactions. In this newsletter, I will expand on this initial, off-the-cuff response.

I want to stress the importance of trusting your instincts and leaning on peer support in this journey. Peer support is a powerful tool that can make you feel connected and supported, especially during the early stages of parenting or when you're starting to consider whether you and/or your children could be autistic.

Currently, one of the most challenging aspects of life as an autistic parent of two autistic and ADHD children is the lack of awareness and acceptance amongst other parents, children, educators, healthcare professionals, retail and entertainment staff, and all the other people we come across regularly in our daily lives. Therefore, this newsletter will hopefully also be helpful for all parents and carers to consider. Even if you and your children are not autistic or otherwise neurodivergent, there’s a good chance you will know a family who is.

Different presentations of autism, masking and demand avoidance

I had heard of autism before early 2021 when traits were first identified in my children, who were 9 and 6 years old at the time. My knowledge was primarily limited to the film Rainman and some rudimentary knowledge from having a couple of friends over the years who had an autistic child or grandchild. However, none of these depictions matched my children.

Despite some challenging times at points during their early childhood and school lives, I did not spot the autistic and ADHD traits for several years. At times, they displayed externally visible anxiety or challenging/naughty behaviour, but I never understood the triggers or misinterpreted the behaviour.

With hindsight, I could identify behaviours and experiences I had observed and struggled to deal with that were likely ‘autistic experiences’ for both children. These included:

• Separation and social anxiety – not settling as easily or quickly into new environments as their peers.
• Excessive worrying – about multiple things in the future and more immediate worries and concerns.
• Difficulties interpreting and understanding other children's facial expressions and body language.
• Anger management issues – difficulty managing frustrations and conflict situations.
• Sensory issues - noise, busy environments, clothing, and food.
• Constipation issues.
• Difficulties with changes in routine – particularly unexpected changes, especially at school.
• Fidgeting and restless – can’t sit still, especially at home.
• Talking excessively without stopping to allow others to speak (son).
• Very shy and limited talking and expression, especially with strangers (daughter).
• Overreaction to being disciplined at school – a catastrophe in their eyes even though it rarely happened.
• A strong sense of social justice and fairness – for themselves and others.
• A strong reaction against arbitrary rules – who knew schools have so many of these!
• Difficulties engaging in formal learning at home beyond reading (homework and during COVID).
• Perfectionist tendencies – extreme reactions to minor mistakes, avoiding rather than risking failing.
• Impulsive and impatient – now or not now (ADHD trait), safety implications, e.g. running off.

Another reason perhaps that I didn’t spot traits earlier was that my children are different in terms of their presentation. My daughter flew under the radar at school despite arguably requiring more support from staff due to what manifested as anxiety going to school and low self-confidence. My son fits the stereotypical autistic profile much more clearly and was identified much younger, but my knowledge even of the stereotype was sketchy.?

It’s important to understand that everyone is unique and has a unique profile of strengths and challenges. When considering whether I was autistic, I only identified some autistic traits after several months with this knowledge and with a greater understanding of what triggers me.

Understanding the hereditary links – what is ‘normal’ anyway?

One reason that many parents and carers don’t spot neurodivergent traits in their children early on in their lives is that they may well be neurodivergent themselves. Therefore, many of the characteristics they observe will be their ‘normal’.

When we’re considering how we process and understand information, much of that takes place internally and therefore, if no one has pointed out that there’s a different way to process, we assume that others must think and process in the same way – they are just better at doing it we may believe if we struggle with something that others don’t.

This also extends beyond parents to the extended family. Although there are no neurodivergent diagnoses among my generation of cousins and in older generations, there are several diagnoses within my children’s generation. Similarly, with friends, it’s a natural human phenomenon to gravitate towards those who think and act like us. So we will often also find our friends have neurodivergent traits, and again, possibly their children will have diagnoses or be experiencing issues socially or in school. What this means is that our frames of reference tend to be skewed. We may not consider that there is anything notably different or unique in how we or our children process and behave.

This is why school age, particularly key transition stages within school age, is when many traits become more apparent and noticeably different from those of other children. By the law of averages, in any school and class, the number of neurodivergent children and young people will be a minority. However, as is being discovered now, it is probably not as small a minority as previously thought.

A lack of awareness and understanding of neurodivergence means that parents and carers often first blame themselves for their children’s inability to comply with social expectations. Schools contribute to this blame game, especially with children who may mask their traits in school. This is where ‘they’re fine in school’ has become such a dogma, a stick to beat parents with, implying that parenting is at fault if issues are being experienced at home.

Links between autism and poor mental health

I was a worrier as a child, suffered from separation anxiety, and experienced similar issues of lack of confidence as my children experienced. Anxiety can also manifest as frustration and anger – for some children, it is easier to be defiant and to actively avoid and physically or verbally resist demands than to acknowledge that they are worried about it. Often, the response will be instinctive and subconscious; the child may not be aware of what is happening, so it’s even harder for parents to identify the root cause.

Anxiety is often what we see first. It certainly was for my children. What I didn’t understand for a long time, though, was what the root cause of the anxiety was. I put it down to a traditional mental health understanding of anxiety - that they were anxious and worried about situations which were illogical to be fearful of. Others and I thought they were overreacting, and their bodies were unnecessarily triggering the fight/flight/freeze response because we believed they were in a safe environment. The solution to unfounded worries is typically gradual exposure – so the body learns that the situation is not harmful.

However, unlike many other children, who were understandably initially worried about a new experience, gradual and repeated exposure never quite solved the anxiety for my children. It would come and go in severity, so the school would see the problem as ‘solved’, but there would often be an underlying baseline level of anxiety that never went away. I now know this is because the environment was unsafe for them. It was too noisy, demanding and changeable; they could not be themselves for fear of punishment or desire to ‘fit in’.

Being anxious seems to be seen in some parts as an accepted consequence of being autistic. CAMHS often refuses to help autistic children because they believe the anxiety is caused by being autistic as if it is an inherent trait and one they cannot offer treatment for.

However, anxiety is only so prevalent for the autistic community because of the inhospitable environments many of us are forced to inhabit – be that schools, workplaces, entertainment and leisure places. None of these have been designed in the past to include those with sensory sensitivities who need smaller, more manageable, and adaptable environments.

Trust your instincts

I wish I had trusted my instincts when my children were younger. As a new parent, professionals and well-meaning friends and relatives throw so much different and sometimes conflicting information at you. I found it hard to comprehend that I might understand my children and what they need better than anyone else because I sometimes felt so at sea, confused about what the right thing was to do.

Particularly with my eldest, when she started to experience severe sensory issues over clothing, I was going to take her to the GP to discuss it and see if we could access any help. However, after speaking to family members who are more knowledgeable about how the system works, they suggested that asking for a referral to CAMHS would be unlikely to be productive. There was a complicating factor in that the issues had emerged in the year following a significant bereavement, and we mistakenly attributed some of the problems to anxiety, a need to control the clothes they will wear, being one of the only things a young child of 5-6 years could control. I did start speaking to the school about her anxiety and clothing issues, but they never flagged this as potentially being indicative of anything else.

Even before my children started school, I knew we sometimes found attending playgroups and other activities challenging. I always put these down to difficult ages, growth spurts, and conflicting preferences and needs between my children. Or I blamed myself. I saw the anxiety and lack of self-confidence I had experienced throughout childhood coming back through my children’s experiences. Their struggles to get into school, which were severe at times, seemed different to most of their peers, but little substantive support was forthcoming. Parents' evenings followed a consistent pattern – academically doing well, as expected for their age – anxiety and lack of self-confidence were generally the only concerns.

Once autistic traits were identified in both children, I knew I needed to push for them to have support, for their needs to be better understood and for any neurodevelopmental conditions to be correctly identified. However, my capacity to advocate for them and to try and push the school into action fluctuated considerably due to what I now understand to be autistic burnout and the ups and downs of my bipolar symptoms. I mistakenly trusted the SENCO’s judgement that ‘watchful waiting’ was a satisfactory strategy. This led to a 12-month delay in them being referred to CAMHS for assessment and support.

I have lent into my instincts more and more as time has gone on. I have researched autism, ADHD and neurodivergence more widely. I have understood myself and my children more and more. I still don’t have all the answers by any means; each time we hit a stumbling block, I can become paralysed by indecision as to what the best thing to do next is. It’s a pressure that weighs heavily on my shoulders at times.

I want to rely on those who have professional expertise. I value the opinions of those we have been able to see. But none of them have the overview that I have as their mum. They generally have a narrow focus or are involved for such a limited time that they only see a snippet of my child and our family dynamics and life.

Find other parents like you – the power of peer support!

If you’re at the start of your parenting journey or have reached a stage where you feel stuck and don’t know where to turn, I strongly advise you to find some local peer support from parents. Many charities and small community-led groups offer support groups for different needs and ages. You can attend groups with your children (especially younger children) and groups just for parents or adults.

Speaking to others going through similar experiences is often an excellent means of getting signposting on what help you can access or should be able to get from official sources like schools, local authorities, GPs/healthcare providers, social care, etc. It’s also invaluable for making your experience less isolating and helping you feel connected to others.

This is so important for maintaining my mental health. I know I'm in trouble if I become isolated, disconnected, withdrawn, and distant. Your parent peers can’t necessarily take the barriers and challenges away, but they can suggest tools or strategies that have worked for them. They can also provide comfort and understanding that you’re doing the best you can with the knowledge and resources you have.

About the author

I am Joanne (Jo) Feaster, a late-identified autistic and bipolar woman. I started self-identifying as autistic in May 2023 and was diagnosed with bipolar type 2 in July 2023. I am married and live in Leeds with my husband John and my two exceptional children, both of whom were diagnosed in late 2023 and early 2024 as autistic and ADHD.

I write to aid my mental health and to share my lived experiences as an autistic and bipolar woman and parent carer of my neurodivergent children. I subscribe to the social model of disability and the neurodiversity paradigm. I see our strengths, positive qualities, and spiky profiles just as much as I recognise the barriers we face from society.