Content note: OCD themes discussed include fear of suicide, health anxiety and moral scrupulosity.

What happens when being Autistic interacts with having obsessive compulsive disorder (OCD)? Here four members of Fixate, a Facebook-based OCD community for Aotearoa, share their experiences.

A growing national community for individuals and their families, Fixate is a Facebook group that acts as an online community for people throughout Aotearoa who live with OCD or support a friend or family member living with OCD. Individuals connected via Fixate have begun to advocate for better understanding of this mental health condition, which can also be viewed as a form of neurodifference. If you would like to learn more, please visit the ocd.org.nz website or email ocd.org.nz@gmail.com.

It is not always autism: repetitive unwanted thoughts are a hallmark of OCD

Zara reading a book titled ‘Honouring Our Ancestors: Takatāpui, Two Spirit and Indigenous LGBTQI+ Well being’

Zara (He/Him/His, They/Them/Theirs) is a queer disabled Autistic person currently studying towards an Honours Degree in Sociology. They are passionate about disability justice and hope to do their Honours thesis on some facet of disability justice or representation. In his free time he enjoys reading almost anything he can get his hands on, especially queer literature.

When Zara was 16, he was convinced that he would die in his sleep. Every night he would spend hours working into rumination spirals and would go bug his mother to seek confirmation that he was safe and okay.

The scary intrusive thoughts, known as obsessions, are OCD’s hallmark. They are the opposite of what the individual believes, values and wants. Compulsions are actions that an individual feels they must do, such as repeatedly seeking reassurance, to counter the unwanted thoughts and to relieve associated anxiety.

Zara was not suicidal and yet was panicking every day that they could potentially end their own life. They distinctly remember telling their GP about having intrusive suicidal images when walking over a bridge, when taking medication for physical health issues, and when chopping vegetables in the kitchen for dinner. Zara perfected compulsive avoidance to an art form; he did not trust himself to carry his medication nor to be in the kitchen unsupervised.

Zara had already figured out that he probably had ADHD and autism. Now, courtesy of accidentally stumbling across advocacy content about harm theme OCD, he realised that he also had OCD. They cried when they realised that they were not suicidal and not broken, and started learning everything they could about the condition.

A month later, Zara walked out of a psychiatric appointment with autism and ADHD diagnoses, but not an OCD diagnosis. The psychiatrist believed that the ‘obsessive-compulsive traits’ were attributable to their autism diagnosis, evidence of mental rigidity and self-regulatory behaviour/stimming, especially because they didn’t have any major stereotypical physical compulsions.

Zara was told that they should imagine a big red stop sign to distract themself from anxious thoughts. By then Zara felt certain that what they were experiencing was not solely attributable to being Autistic and had learnt enough about OCD to understand that such a coping mechanism could, in time, become a mental compulsion.

They say that “I am lucky that by then I knew that, so I did not heed the advice.”

Zara said that being unable to get the help that he needed for OCD impacted his ability to cope with autism. When OCD consumes your every waking moment, Autistic traits such as overstimulation and meltdowns become far harder to cope with, and simply existing feels like a chore.

Eighteen months later, Zara called their grandmother crying, unable to cope any longer with the disturbing thoughts and unwanted compulsions. He asked for approval to access some money from a bank account that was not supposed to be touched until he was older. In December 2023, they walked into an appointment with one of the best OCD specialists in the country. Twenty minutes later, the clinical psychologist agreed with the diagnosis that Zara had found and clung to like a lifeline: they had textbook OCD.

Zara regards himself as one of the lucky ones.

“I had the option to go private and seek the diagnosis that I needed. But so many of us are overlooked by the public system, especially if we have co-occurring conditions that overlap, as in the case of autism and OCD.”

OCD targeted my uncompromising personal ideals, courtesy of autism

Alyssa with pounamu pendant

Alyssa is a 21-year-old Autistic with a passion for astronomy and astrophysics. Her interest in space began when she was very young. Her family recalls fondly the memory of a determined baby crawling with a very particular purpose, come sunset, towards the moon as it became visible in the twilight.

By the age of 11, Alyssa says that self-protective mechanisms in her mind had effectively malfunctioned and turned against her. She had become her own judge and jury. The punishment anticipated for failing to complete ‘simple’ tasks: an excruciating and graphically detailed torment that awaited both Alyssa and her family for all eternity. For example, Alyssa believed that if she didn’t do certain things in specific ways, such as looking in the corner while swallowing or tilting her head to the side and saying a certain phrase like Port Hills or Andromeda galaxy, she and her family were at risk of being tortured or harmed. That feared consequence was how her child’s mind justified making her spend hours on repetitive compulsions and so pulled her further into a spiral of mental distress.

With hindsight, Alyssa has realised why intrusive thoughts with a moral theme were so persistent and increasingly intense and nasty. They were, in part, due to a strict moral compass that had become ingrained while growing up in a Catholic environment. They were also related, in part, to staunch personal ideals about what it meant to be a good or bad person, courtesy of autism. Failing to protect herself and her family by any means necessary would mean Alyssa was evil for allowing bad things to happen.

It wasn’t until Alyssa was 19 and seeing a new psychologist that she was diagnosed with autism and learned what it meant to be takīwātanga. She began to receive treatment for OCD that was tailored with autism in mind and, for the first time in twelve years of therapy, she began to get somewhere.

Alyssa says, “My relationship with OCD began to shift dramatically, and at the same time, I finally felt like I was okay with being myself.”

OCD no longer controls Alyssa and the intrusive thoughts that do occasionally pop up simply hold no weight. She has found friends in the Autistic community and has met new people through a shared passion for games like Dungeons and Dragons.

Neurodivergence is a family affair

Jacqui with her two sons – Zane (left) and Hayden (front) – and her
daughter Tyla

Jacqui Eggleton is a solo mother of four children who is doing a Diploma in Early Childhood Education. Jacqui has OCD, as did her Nana. Two of her three sons are Autistic with Intellectual Disability and her daughter has Tourettes.

One way and another, over the years, Jacqui, her children and the extended family have experienced a lot. She says, “The things we have been through have made us a very strongly connected family, being able to appreciate each other’s quirks and support each other.”

For Jacqui, OCD flared up during a very stressful period in her life. The birth of Jacqui’s second child was difficult, and she experienced postnatal depression. There was also the death of a dear friend and financial struggles. This was the beginning of an ongoing battle with OCD, although looking back now she can see smaller episodes as far back as her teenage years.

Jacqui’s OCD can make day to day life in her house extra challenging. Everything must be done in small steps. She can only put one item of clothing on the clothesline, take one peel of a potato or mow one strip of the lawn before panic and anxiety overcomes her and she needs to walk away. Furthermore, everything that is thrown into the rubbish bin or recycling must be spotlessly clean. Her Autistic children can easily do the jobs that she finds hard and can stay on task better than Jacqui.

The household functions by utilising the strengths of each other.

Fifteen years ago, when Jacqui was formally diagnosed with OCD, she had hoped that would open a pathway to getting help within the home in the way of a therapist working alongside and helping her with the anxiety and panic attacks. Instead a lot more agencies became involved with the family.

Jacqui says, “It felt as though it was expected that I could just flick a switch and the OCD would be gone and the house would be tidy.”

Jacqui reluctantly agreed to have her two youngest boys live with their Dad. This was an incredibly hard adjustment. She says, “I wish that I could have been in a better mental health space to keep the house cleaner so that my children could have had friends over without feeling embarrassed.”

Jacqui is now 53 years old and her children are teenagers and young adults. Jacqui has had counselling from both the public and private system over the years. It has been a case of taking suggestions and piecing together what works for her. By using self-calming techniques and methods from Exposure and Response Prevention (ERP) therapy she can quieten the OCD thoughts.

She says, “I have started to tackle my OCD slowly but surely and have turned a major corner where I am gaining control and we can have people over without feeling a sense of embarrassment.”

Many people with OCD are unable to access formal diagnosis and treatment

Te Aroha attending the Hikoi mō te Te Tiriti in Gisborne.

Te Aroha Harrison-Kaa (Ngāti Porou) is an Autistic artist and Screen Arts student majoring in Concept Art and Design.

Te Aroha’s earliest ‘OCD memories’ are from when she was around six years old. Her first obsession was about heart attacks. She was terrified of the idea that your heart could just “stop” at any moment and so started holding her breath for a certain amount of time. She would tell herself things like “If I hold my breath for 10 seconds I won’t have a heart attack.”

At age eight, Te Aroha was hospitalised because she refused to eat. Prior to that her eating had gradually become very restrictive. She rationalised that if you don’t eat, you don’t get fat and if you don’t get fat, you won’t have a heart attack. Initially she compulsively checked food labels for fat and sugar content and eventually just stopped eating food all together. Her parents didn’t know what was wrong, neither did the doctors or nurses and, being a child and Autistic, Te Aroha had no idea how to explain what was happening.

Te Aroha has a lot of mamae (pain) about this time. As far as she can recall there was never any kind of psychological assessment. Instead she was given laxatives and various physical tests. The reason Te Aroha started eating again, initially in small amounts and slowly, was the distress shown by her parents.

As a young adult, Te Aroha had another bad bout of OCD. This time the obsessive thoughts were all over the place, but the major one was a fear of developing schizophrenia.

Te Aroha lived with her family for quite a few months and met with a counsellor who was and continues to be supportive.

During this time Te Aroha described her experiences in a post on Reddit to a forum on anxiety. Someone replied suggesting that she may have OCD. Her initial reaction was, “Nah, that’s the cleaning disorder.”

“At the time I genuinely thought, and excuse my past ignorance, that OCD stood for ‘Over Cleanliness Disorder’. YIKES. So I guess that serves to highlight the severe misunderstanding that I had and a lot of people have about OCD.”

Once Te Aroha learned what it really was, everything clicked. However, she quickly realised that there was restricted access to OCD specialists in this country and that any overseas options were too expensive. So she determined that she’d learn about ERP therapy and treat herself.

She says, “Of course my whānau and friends supported me hugely, but you know, no one knew what OCD was really – we all had to learn. I did, thankfully, begin to recover and am now in a much better space.”