Navigating adult mental health services as an autistic young person

Navigating adult mental health services as an autistic young person

I go by the name of Philip Milburn but you are welcome to call me Phil, I’ve spent some of my time interacting with the adult mental health service and now I wish to show to you what I found there. As an autistic service user I feel uniquely prepared to explain why it failed me. One of the biggest difficulties of my autism is what I call ‘autistic rumination’ – the tendency to get stuck in cycles of negative thinking. 

During the torture that was a recent SEN Tribunal, I struggled profoundly with feelings of persecution and desperation. My rumination means I am often re-living these feelings and this is why I wanted help.

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Waiting for help from services

How long was I made to wait? Over a year…..let that sink in.

This shows that the health service either doesn’t understand or care about the severity of what people like me have to endure. I get the impression that for everybody like me who gets through that sort of wait, some people would self-harm, or even kill themselves.

It’s worth noting that I had a large support system with many friends and family to support me. Many other autistic people will have had less supportive company around them and so would be in a worse position than me, and I barely made it.Only when Zoe (Mum) threatened them with a complaint did the adult mental health service finally make an appointment.

A BIG mistake

After over a year spent waiting I got a phone call that, to their credit, did raise my mood in the sense that it made me laugh. The first thing the woman from the adult mental health service on the phone comes out with?

“So first things first, what is your sexual orientation? Homosexual? Heterosexual? Bisexual? Transgender? Or prefer not to say?”

After a moment of disbelief I replied with a voice that didn’t try to hide my hostility, “Definitely the last one…”

I was meant to be giving details of the condition of autistic rumination, what did that have to do with sexual orientation? First of all, I know that they are meant to connect with me on some level, and I also know that my dress sense might remind you of Demi Lovato, but I didn’t invite them to some morning-after pillow talk. I was expecting that any second throughout the rest of the phone call, something like “Are you circumcised?” would appear as a discussion topic. The call was meant to be a straightforward and professional discussion about my mental health and not to sound like a deleted scene from Sex and the City. I don’t know what they were thinking. Secondly - being transgender is a gender identity, not a sexual orientation.

This is a shocking and embarrassing conflation that shows that the people who are meant to be helping others, in some cases with their sexual orientation or gender identities, are making rudimentary mistakes. Getting a gender and an orientation mixed up is one of the most cringe-worthy mistakes I’ve ever witnessed. It shows a truly intense and painful lack of knowledge as to what they expect in that regard. I mean - I cannot get over it, it’s funny and infuriating at the same time.

So back to services – from the initial consultation, I was referred to a specialist centre called LANC-UK that states on its website that it, ‘has developed a national reputation for its ability to assess and manage children, adolescents and adults with complex neurodevelopmental difficulties.’

The service I was offered

For now, I’m going to take you through the exchange that took place between me and the LANC counsellor. I will explain how I felt and why it was one of the worst meetings I’ve ever attended.

Upon entry I was greeted by the counsellor, “Come in Mr. Moorland.”

My surname is Milburn; did the counsellor have to make her patients feel like they are forgettable or not worth paying attention to? I did that to a friend once and felt royally embarrassed before I made things right, so I know how that feels.

The counsellor responded, “Milburn, ok.” With a cold indifference.

That is one the most basic mistakes you can make in any job, but this is exceptional because the people who arrive at this service, if you can call it that, are in horrific states and some near suicide. In some cases they will be feeling like they are unworthy of love and attention. I wasn’t feeling that bad but it was antagonising to be greeted like this and I worry profoundly for those who would find this a deep cut. After that I entered the interview room with a huge amount of effort to keep my disdain hidden.

When I sat down to begin the meeting the counsellor said to me, “Where do you want to go from here?”

I replied, “I want to get over my autistic rumination.” This was mentioned in my initial referral form so I don’t know how it got missed.

The counsellor continued, “We’re going to do some life coaching, are you ready to begin?”

What should have been explained to me

  1. What is “Life coaching”? 
  2. Has it been made for autistic people or was it re-purposed from another job because nobody thought to bring in anything better?
  3. Is the service expecting me to know all this or to say yes without being sure of what I’m doing?
  4. What hours will I be doing it in?
  5. Who will be doing it with me and why should I trust them?
  6. Will you let me try and work out the confusion you are instilling or am I not allowed to seek some clarity? 

For a counsellor to jump from A to Z like that and somehow think they’re being constructive means it’s a challenge for me not to laugh. Overloading patients like that and making them panic is a disastrous move.

After having the six thoughts I mentioned above run through my mind in less than a second, I replied, “Well I’ll do it if it makes my autistic rumination less intense.”

The interviewer’s demeanour then took a nasty turn - she looked at me in an intimidating way and spoke more loudly, “Well you won’t feel any better unless you decide to do this, I can’t help you if you don’t try.”

I almost laughed at her for saying that, and then she continued, “If you don’t make an effort here you might as well just give up.”

I gritted my teeth and tried to supress my anger and frustration. “Yes… I’ll try…”

Am I crazy or is it unwise to place the responsibility of motivation on people who are in that room because they have a low quality of life and in many cases cannot motivate themselves to keep going in life? Someone who claims to be professional decided to put the pressure on me to push back my own misery and try to gain happiness: rather than offering support and trying to rally me to do something difficult, she sat there expecting me to take control.

I watch a lot of fictional works that contain characters who represent aspects that society does not value, and I keep thinking of them when I consider what was said in that meeting. It does sound like an excerpt from the movie Mean Girls or something similar. I’ll keep coming back to this, but if you know anyone with depression or who has been depressed, and you love them, picture them getting that from a so-called professional. Would you not think it was a cowardly, cold and outright nasty thing to do? An egregious and manipulatively abusive way of placing totally unrealistic expectations on someone, and in a context where the other person is paid and trained to help people who cannot do something themselves?

The whole point is that the patients they deal with, in many cases, are totally unable to motivate themselves, so what do the experts (and I’m using the term loosely) think is a wise choice? Dodge the responsibility and try to force the near-suicidal individual to do their job on their behalf.

Total joke: I was beyond words, I didn’t know what to do or think or feel. I made a mental note that I should not stay too long because I was getting rather angry, so I knew by then if she didn’t improve I’d have to leave. To be begrudgingly fair she did, albeit too little too late, ask me what my symptoms were.

“So how does your condition affect you?”

I told her how it worked for me, “I tend to get hung up on what ifs and once painful things… it’s hard since not many can make sense of it.”

Upon hearing that, the interviewer went off on a tangent. “So that you know…… I do work with lots of autistic people, including some of my family.”

My kneejerk reaction was that I was not about to sympathise with the interviewer, and I didn’t know what this had to do with anything. This isn’t the first time I’ve heard this type of thing from amateurs but it’s just as infuriating as before. Having some loose association with people with some condition does not mean you are good at helping them. I used to work with dyslexic people but that doesn’t make me an expert in the condition. 

As time went on I lost more patience and felt extremely unwelcome. The counsellor droned on a while longer but the damage had been done. If I stayed in that room I might have lost it with that woman and started a brawl, as I was so angry with how badly she was floundering. So I said I was done.

“You know what there is nothing keeping me here, I don’t need your involvement, I’m off.”

The counsellor moped and muttered something like, “Ok, ‘bye then.”

I want to point out that her demeanour and mannerisms were awful: she came off as resentful and weak, quite defeated. This made me feel even more unhappy than I was going in, but it was a relief when I left.

Now I’m going to take you through a discussion I had with a close friend of mine who heard about my challenges and struggles. I’m sharing this as an example of what that meeting should have been instead of what it was.

Help from an untrained friend

Phil: “It took me three years to get over that trauma and I came out right into another…”

Ivan: “But you got better after everything.”

Phil: “First time I’ve felt happy, healthy and safe in almost a decade.”

Ivan: “The people who wronged you have sins they cannot pay off. You and I had nightmares to worry over but here we are, living and breathing.”

Phil: “Glad of it.”

Ivan: “Just remember I am telling this to all that need it, just keep breathing.”

Phil: “I will…….not enough motivation for suicide anymore.”

Ivan: “Everything that happened is behind you and we are marching towards the future, so leave that trauma behind.”

Phil: “I’m getting help with RDI to be able to leave the trauma behind… it will become possible one day.”

Ivan: “Don’t be sad about something that has happened and something you couldn’t have changed: live and change the things you can now. If you can’t let go of something you can’t make changes.”

Phil: “I can always rely on you.”

Ivan: “I am telling you this because I want you to do it, really I do. Don’t be sad about the past, be the best in the future.”

Phil: “You know what, you’ve saved me a day’s work - this is what I needed to hear for my new article. I’ll use this for the ‘what they should have said’ part, thank you so much and never lose sight of your integrity.”

Ivan: “I’ll keep telling you this until you’re better, but you don’t have to rely on me, rely on yourself. Don’t be impressed by me - learn how to use it and take control.”

This is a perfect sentiment from someone who has a myriad of things to offer to people, who has no qualifications or training, and it puts the LANC service to shame. Really gives a black eye to the idea that people who are not qualified are unfit to help. Why oh why was this so hard for LANC to get right?

Grand finale

In addition to everything else I brought up, I have a final showstopper for you. While at the LANC offices I asked my Mum to take a picture of the one thing I found faintly interesting. The CQC’s assessment of the LANC service.

The eye-catching poster. Credit: Zoe Thompson
  • Judgement of ‘requires improvement’ for safety: I’m not sure how a service that isn’t safe can be effective….?
  • Judgement of ‘good’ for effectiveness: how is ‘effective’ defined? From all I can see they are not effective given that I left a 45 minute session in a mere six minutes due to feeling unwelcome and unvalued, with my mental health in a worse state than it was before I went in.
  • Judgement of ‘good’ for caring: Don’t make me laugh; I felt more comfort from strangers than I did from the people there. The counsellor made me want to leave.
  • Judgement of ‘requires improvement’ for responsiveness: if by that you mean making me wait over 400 days then ‘requires improvement’ is an understatement.  ‘Not fit for purpose’ would be more accurate.
  • Judgement of ‘inadequate’ for well led: well at least the CQC got one thing right, not that I’m too happy about it. 

The thing I don’t get about this is how can something do so well, or at least be told they are doing well, in two areas while having the worst rating on its management? It’s a discrepancy that doesn’t make any sense. No organisation, be it commercial or mental health-oriented can shine that bright in being effective and caring (not that I believe those ratings are truthful) when its management is flat-lining.

Another thing I’ll add on, that I learned after the meeting was that “Life coaching” is something made to help people with ADHD and not autism, so they were offering something that was the wrong thing, for the wrong job. I get the impression that the management at LANC would bring a knife to a gunfight. My experience with this service was a disaster from start to finish. I cannot get over how anything could be this bad in so many ways and still be allowed to provide a service to people who need help the most. It deserves no mercy in being named and shamed in its entirety. 

I have never in my life come across anything so brazen and without any saving graces and there is nothing good I can say about it at all, it’s useless! Totally and completely useless!

How RDI (Relationship Development Intervention) has helped to address my autistic rumination

 Thankfully unlike LANC, I can offer a solution for people with autism who want to work on their autistic rumination. R.D.I. has helped me to start to get free of my rumination and has done more in the few months we have been using it for autistic rumination than LANC and their practices could do in a year.

A prime example of R.D.I. doing its job: my Mum has been helping me to look at mistakes that I have made and mishaps that have impacted on me and to describe the ‘changes in emotional state’ that I felt at different points in the mistake/mishap scenarios. So at first when a mistake happens I might feel very frustrated. Then a few minutes later my frustration will have lessened and if I then take an action to help myself, my feelings of frustration decrease even more. Sometimes I may even have a feeling of being competent and successful at having dealt with a mistake.

For example, one time recently when I was on my own at home, I felt a rumination attack coming on (a major mishap). I started to feel panicky, agitated and desperate. I decided to go and see a friend at our local café and felt a bit better at having come up with a possible solution. When I got to the café and had a chat, my spirits lifted significantly and then when I came home afterwards I felt proud of myself for being able to take the initiative to stop the rumination attack. Those were my changes in emotional state.

This has helped me to see that these mistakes and mishaps are not as bad as my condition would have me believe. By looking at mistakes and reflecting with my Mum on the changes in emotional state that I felt, I have discovered good things about myself and my ability to handle difficulties. 

I have also noticed that when I re-watched previous YouTube clips from ‘The Apprentice’ (one of my favourite pastimes) recently, I have looked at the characters’ mistakes in a completely different (more compassionate) light: I have felt empathy for them rather than feeling frustrated with them as I did when I originally watched the clips

Doing this work has enabled me to see that many of my mistakes/mishaps were not a big deal and in some instances, I've not gotten bothered by mistakes at all. In addition, when they've caused pain it has been weaker than it ever was before I had this support. It makes my life far easier. I find that my tendency to ruminate is lessened. When I do ruminate, my Mum uses RDI to help me to remember the good feelings I had about myself being competent when dealing with difficulties. This gives me strength to deal with my rumination. Eventually I hope to be able to do that for myself, without my Mum’s support – that is what we are working towards.

We have been putting the mistakes and mishaps and the feelings related to them into different categories on the RDI Platform (the online learning and reflection system) so that now, when we know that something difficult will be coming up, we can retrieve my reflections on the emotions I felt relating to the actions I took in a past scenario to help me prepare for the upcoming challenge. This could be used to help people who have autistic rumination wherever they are sent to get help for it, and yes it was made with autism in mind.

Thank you for taking the time to read my article, I hope it is helpful and informative. Pray that LANC are never trusted with even an amateur’s job, nobody deserves to have them as a service. As they couldn't help me, my Mum is now trying to get me a Personal Health Budget to see if that can fund some RDI sessions directly with the RDI Consultant who supports us to run our RDI home programme. At my request, my Mum has made a complaint to the Clinical Commissioning Group (CCG) about the LANC service. We may end up at the Ombudsman again.......

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Note to my readers

I wanted to address a mistake I made in my first article about S.I.T. (Social integration therapy) as I sent out the message that socialising with non-autistic groups is always unpleasant and painful. This is not necessarily the case, of course – socialising with NT people can be fun/enjoyable. I do wish to maintain however that S.I.T. will at best have an insignificant improvement on an autistic person’s social competence and that it does not prepare you for the workplace, or a relationship, or grant you a good quality of life.

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Philip Milburn

Philip Milburn is a young man with autism. He is the son of SNJ columnist and special school head, Zoe Thompson. Philip writes about his experiences as a young person with disabilities navigating the system and the people within it
Philip Milburn

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