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Finn’s Story

Finn Higgins was known to users of the Public Address System discussion forums as a keen-minded, literate, witty and sensitive debater, and an asset to the community. What we could not know was the extent to which he was struggling with depression and anxiety in his personal life. These problems were related to an undiagnosed autism spectrum disorder: Asperger syndrome. They eventually claimed Finn’s life.

The following story is the work of Finn’s mother, Dianne Standen, for a forthcoming website. Dianne has also written her own story, which will be published both here on Humans in the next few days, and on Dianne’s new website.

Dianne says:

“Depression is regarded as a secondary mood disorder for many people who live with “high achieving” Asperger syndrome. The strain of managing Aspergers characteristics unsupported within society may prove overwhelming. It can lead to depression and thoughts of suicide.

“Sadly, many have not survived the experience — including Finn Higgins, who died February 11th 2008 at Mount Victoria, Wellington, New Zealand aged 26 years.

“Finn is one of many young Asperger people whose early death has devastated their families and friends. Finn’s death could have been avoided if he had he looked for more information and support from others. Sadly what probably proved fatal for Finn was the treatment he received from the Wellington mental health team managed by the Capital and Coast Health Board His story needs telling to prevent further deaths being caused through ignorance.”

FINN’S STORY

Although I now appreciate that Finn showed early indications of Asperger syndrome it was never a problem in our family and Finn considered he had a happy childhood with education at Waldorf schools in England and New Zealand. However he went on to develop feelings of isolation in adolescence that culminated in a depression when he was 15 years old.

He coped with help from his family but silently suppressed the issues. For the next ten years he was employed in a variety of technically challenging IT projects where his ability and application were well-respected. Alongside work he funded and completed a drum course and moved on to self-employment as a music teacher.

He had a dynamic, creative musical career and two warm, loving relationships. In both IT work and music Finn was a, self-taught, accomplished performer. Sadly, beyond the interaction that both activities brought, he felt unable to connect with people around him. The pain that arose from that was a large element of Finn’s depression which he tried to keep at bay by immersing himself in his passion, music.

Around 2006 he identified his long-term depression with Asperger syndrome characteristics and feeling unable to communicate, co-operate or network, despaired of a future in music. Critical of his own abilities and constantly striving for perfection in his drumming he turned away from the creative work which had sustained him and went into a major depression in early 2007. Following that he spent many months supporting his partner through a breakdown.

On February 8th 2008, against his will, Finn came to the attention of mental health services in Wellington, New Zealand where he had been living since 2006.

He was prescribed Citalopram, an anti-depressant. Though its manufacturers warn there can be an initial deterioration and advise monitoring this was not mentioned to Finn or his partner. Within two days of starting the drug Finn’s anxiety and depression deteriorated to the extent that Wellington mental health team (CATT) considered he should enter temporary care for his own safety.

Finn refused and was adamant he needed to stay in his home to feel secure. He gave reassurances about his safety and requested help from his family. Contacted in England, I suggested an alternative to removing him by force . It involved phone support in his home for 48 hours until his sister Zoe could arrive in Wellington from England to help him. This option was rejected without consideration.

The sectioning was started but not completed. The CATT team then left Finn and his partner alone. Finn, distressed by the proposed action, fled and attempted to drown himself in Wellington harbour. Heavily stung by jellyfish, he returned home to his partner and exhausted slept for 3 hours. Although his partner contacted the Crisis team and told them Finn was home and willing to talk to CATT no assistance came.

When he awoke to again face the prospect of enforced sectioning and removal by police he ran to Mt Victoria and committed suicide. I was not aware of Finn’s identification with Asperger syndrome until after his death but Finn was quite open with his assessment of the origins of his depression to the Wellington mental health team.

Whilst self-diagnosis can be contentious, Finn neither sought nor welcomed the involvement of mental health services. When a self-diagnosed Asperger person first presents as a crisis case then their analysis should be respected. His health notes acknowledge he had informed them of Aspergers syndrome by noting ‘self-diagnosis !‘ with an exclamation mark.

Although his notes go on to describe classic Asperger characteristics over the next few days there was no association, advice, assistance or treatment given in respect of Asperger syndrome. The Health team noted: – 1] Reluctance to have personal contact or interact with mental health team. 2] Limited eye contact and, obvious movement disorders. 3] Inability to project or consider future outcomes. 4] Refusal to contemplate respite care as he would be stressed by unfamiliar environments and people. 5] Rapid deterioration in his condition after starting Citalopram which was not monitored or noted. 6] Identification of his need to have his partner around to make him feel secure.

Relationship problems were assumed to be the cause of his depression and his behaviour towards his partner was wrongly identified (sadly a common , inaccurate assumption in Asperger relationships] as being manipulative and selfish. This undermined the support his partner was struggling to give and ultimately led to Finn feeling betrayed, another factor in his ending his life.

His last e-mail to me described the paranoia and mental confusion he experienced after starting Citalopram. Virtually every action of the Wellington mental health team intensified the pressures and despair that was crowding in on Finn. There seemed to be no knowledge of or sensitivity to Asperger issues.

Throughout his life I had supported Finn , often with considerable doubts, in his control of the issues that arose from undiagnosed Aspergers syndrome.

It gives me considerable personal pain that I was unable to help in his last request which was to stop the sectioning action which culminated in his death.

Reflecting on his life I know Finn was correct in identifying Asperger characteristics as the root of his depression. He described them as “blessing and a curse”. His partner described him as follows:

“He had different priorities to most people. Finding a post in life where he could be doing things of worth, such as making good music, or writing aesthetically ‘beautiful’ code was only second to keeping those he was loyal to, safe from harm. Knowledge, truth and perfection all came from code (ie writing computer programmes) and this would perhaps take priority over making dinner or having a shower, or even finding a job. His rationale would be that it would make him happy and he can’t do anything else if he’s not happy.

“He kept at least one difficult programming problem in his head, in case he was bored or upset and needed something calming to think about. Hence solving difficult logic problems made him relax and happy. If he became significantly mentally upset, it would affect him physically and he would shake or twitch uncontrollably.

“Finn valued being creative rather than cooperative. He was attentive to the details as well as the big picture . He wouldn’t want to make a judgement without getting all the perspectives you could possibly get on the topic. He has come across as confident and direct when it came to speaking about intellectual topics. He shied away from small talk and felt extremely awkward around it. In a way he felt safer in solitude as he found strangers to be irrational and therefore scary. This however gave him pain too, as he wanted to be able to connect with people easier. He just felt that when it came to social situations, he forced the group dynamic to freeze and there would always be a kind of awkward feeling between even the people he called friends for so many years.

“There were several examples of times when he had brought up topics that alienated the people around him, and he continued on – unable to recognise that he had lost the people he was talking to. He has never understood why it happens or how to change it, which is why he felt pain about never being able to be in a musical group/close social situations where you need to feel comfortable .

“Finn was overall unhappy with being stuck with a mind for logic, when he wanted a mind for creativity. In his logic world, he felt so far away from feeling human. He was a beautiful, intelligent, selfish, gentle, warm, indulgent, honest, entertaining, overly enthusiastic, amazing human being.”

FINN’S PERSONAL ACCOUNT OF ASPERGERS

An email written a few weeks before his death:

Hi,

I just read your post over at Humans about the issues you’ve been having with schooling . That set off a whole load of bells in my head, as I went through a whole load of chaos with school as a teenager. I was virtually absent from formal education from just before I turned thirteen until well after I turned eighteen.

There was never any medical involvement, but it’s definitely hard to read any accounts of living with AS without feeling a lot of overlap with the experiences I had with school and my early years of working. In terms of qualifications I have virtually nothing: I passed a GCSE in maths when I was 14, but basically all attempts at getting tutors involved and running formal home education ended quite badly.

That’s not to say I didn’t learn – but anything I did learn needed to be interesting to me and applicable to my own projects. I never went to university, although I do have a 1yr diploma from a music school that would qualify for entry in the UK with some fast talking.

If I’m going anywhere with this it’s to say that even the virtually complete rejection of formal education that I managed doesn’t need to be the end of the world. I had to deal with some serious anxiety and a few years of relatively crappy jobs when I started working, but I’m now 26 and have managed to work my way into a situation where I can go after jobs I care about and enjoy, and where I can apply myself and my skills to do things that have value to me.

I’m also comfortable enough socially that I have a wonderful partner who I love dearly, and who can put up with my occasional odd turns very sweetly and effectively. I wouldn’t claim that life is perfect or that I’d not have preferred things to have gone differently, but it’s all survivable and doesn’t have to go bad places.

My experience has been that generally life eases up on people with intellectual/practical skills and social difficulties as an adult Particularly if they’re good with computers or play the drums, two areas where being socially inept are practically badges of merit.

Anyway, let’s just say that being an exception isn’t all bad. It was no fun at the time for either myself or my mother, but I think I’ve come away from the experience with a degree of ability to guide my own learning that many people never get from years at school and university, and it’s actually become very valuable when it comes to being employed (and self-employed). It’s certainly left some scars, but they’re survivable ones.

I don’t know if any of that is helpful to read, but you seem to be doing all the right things in terms of being a caring parent from my perspective. I’ve got a huge amount of respect for you in the way you’ve taken your experiences and turned them into positive things like the Humans site.

All the best,
Finn

Posted in Advocacy, Asperger Syndrome, Bad practice, Stories, Uncategorized by Russell Brown on Wednesday, September 17th, 2008 at 10:36 am. Follow responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.

11 responses to “Finn’s Story”

  • Gravatar

    Matt Frost wrote on September 18th, 2008 at 11:27 am:

    Hi Russell and members of Finn’s whanau,

    Firstly, I’m ‘new’ to Humans so please let me introduce myself. I’m Matt Frost, a 28 year old Aspie from Wellington. I had the pleasure of meeting Russell at the Autism NZ Conference on the weekend and the honour of hearing Finn’s story from Russell.

    To Finn’s mum and partner- It is very difficult for me as a fellow Aspie to express how I feel about the loss of Finn, who sounds like he was a highly articulate person who had great warmth of spirit. This comes through clearly in his own personal account of being an Aspie. What is so impressive about Finn’s e-mail is that even when he was in the dark space which is depression (I know having been there) that he was able to be positive, forward looking and able to use his experiences to help other people- esp. with their issues in the education system.

    I should say that this point that I chair the Implementation Advisory Group of the ASD Guideline- one of the key areas identified there is the importance of an education system which can respond sensitively to people with ASD and their families and allow them to explore their talents and be challenged to find new ones in a positive way. I also absolutely agree that we need to urgently think about the mental health needs of people with ASD.

    I also want to commend you too Russell and agree with Finn. I think ‘Humans’ is a great example of what the UN Convention on the Rights of Persons with Disabilities talks about when it talks about having positive images of disabled people in the media.

    Thanks for your comments about me on the ‘Hard News’ blog- I look forward to posting more on Humans. I’d best get back to my ‘day job’ now. But I look forward to keeping in touch so that we can ensure, slowly but surely, that situations like Finn’s don’t happen again. The world can’t afford to lose talented people like Finn.

    Best wishes to all,

    Matt.

  • Gravatar

    dave hamilton wrote on September 18th, 2008 at 1:06 pm:

    Thank You . My deepest sympathy’s .

  • Gravatar

    Russell Brown wrote on September 18th, 2008 at 5:01 pm:

    I also want to commend you too Russell and agree with Finn. I think ‘Humans’ is a great example of what the UN Convention on the Rights of Persons with Disabilities talks about when it talks about having positive images of disabled people in the media.

    And speaking for themselves, too. I think that matters.

    Thanks for your comments about me on the ‘Hard News’ blog- I look forward to posting more on Humans.

    Like I said, anytime.

    I’d best get back to my ‘day job’ now. But I look forward to keeping in touch so that we can ensure, slowly but surely, that situations like Finn’s don’t happen again. The world can’t afford to lose talented people like Finn.

    Amen. I have some plans …

  • Gravatar

    Hilary wrote on September 19th, 2008 at 10:03 am:

    There are some great new initiatives happening around NZ which I heard about at the Autism NZ conference last weekend. Local projects like training courses in Autism for Work and Income staff, and others focussed on police and the judiciary. These are usually low key projects involving parents, people on the spectrum, and autism branches, an identified problem, a bit of local funding and a lot of enthusiasm. Good ideas which take off and can be used as models for others. One exciting initiative is happening in the Wairarapa involving seven schools, some extra Ministry of Education funding, the local GSE, and professional development in autism for all school staff, including non-teaching staff and caretakers. A model that could be taken up anywhere.
    Hopefully these and other initiatives will make things safer and more welcoming to people with autism.

  • Gravatar

    Matt Frost wrote on September 19th, 2008 at 12:21 pm:

    Hi Russell,

    Thanks for your response. Absolutely essential I agree that we speak for ourselves!!! Lets talk about the plans you have at a later date…

    Have a great weekend,

    Cheers, Matt.

  • Gravatar

    Alyson Bradley wrote on September 28th, 2008 at 11:21 am:

    Stories like this need to be heard, and I thank Finn’s family for that, as your strength will help others. I know only to well being a fellow aspie the realities of not feeling like you belong or are understood in this world, some how I survived, my mother never did, she suffered a life time lost,its like a part of her life was stolen from her.

    To Finns family, I know there are no words.. but can relate to your pain, and just want to thank you for sharing, as those of us still are fighting to be included in often an unforgiving world, it truly helps… Finn was one of those special people who deserved so much more.

    From when you are born society dictates how you act and think to a degree. So having Aspergers and not knowing when growing up,to me was always like I had some dark shadow over my shoulder, close behind effecting my every move, and no clue why. Aspergers has never been the problem, the dark shadows and the alienation for being me has…

    I know we need to celebrate and understand the good and positive of being on the autism spectrum, but just as important to remind others, when they keep others on the edge of society, a darker side will continue to exist, we all need to be more open minded and not dismiss what we may not understand ourselves. I will continue to fight to give those of us a voice who are still not being heard. Alyson Bradley (asplanet)

  • Gravatar

    Duncan wrote on February 28th, 2011 at 11:42 am:

    I would have considered Finn a personal friend and first made contact with him on a forum for musicans.

    I appreciate that this is perhaps a belated comment and of no help to those left behind in his tragedy, but let it be said that in my experience, Finn was one of the warmest, most intelligent and selfless individuals I have ever had the pleasure to meet.

    Long may he rest.

    Duncan Taylor, England.

  • Gravatar

    Christiana wrote on May 9th, 2011 at 2:49 am:

    What a joy to find such clear tinkhnig. Thanks for posting!

  • Gravatar

    Andy wrote on September 30th, 2011 at 4:50 pm:

    Hey Dianne,

    I was looking up some info on Asperger syndrome and came across this blog. Thank you for sharing Finn’s beautiful story. God bless you.

    Andy

  • Gravatar

    Susanette Marion wrote on October 6th, 2011 at 12:43 pm:

    I agree with you Matt.‘Humans’ is a great example of what the UN Convention on the Rights of Persons with Disabilities talks about when it talks about having positive images of disabled people in the media.

    I was also looking up some info on Asperger syndrome and came across this blog. Thank you for sharing Finn’s beautiful story.

  • Gravatar

    Ally French wrote on March 26th, 2012 at 6:51 am:

    Thank you for sharing Finn’s story !
    My niece has been diagnosed, and my brother doesn’t talk about it.
    So I look for info on the internet…