Understanding of Autism in mental health services?

[jliddell279]

Hello,

I am a masters student completing a psychology degree at the moment. I am also an autism specialist nurse who works at an acute hospital as a liaison between healthcare professionals and autistic people. I am very passionate about the health inequalities autistic people face and work hard to break down barriers between professionals who dont get it and autistic people who find accessing services difficult.

I am completing a study looking at mental health literacy in autistic people and their experience seeking help within services. Currently, its a survey and the first half will look at the understanding of mental health symptoms etc and the second half will ask for experiences seeking help if you ever have.

If you dont mind taking the time to complete this, it would be greatly appreciated. There is some more information below. I need at least 25 more responses for the data to be meaningful. The link is below.

Survey
Please note - i have been granted ethical approval by my university.

Kind regards

-James

• What is this study about?
  
  Research has shown that autistic people have a higher probability of experiencing mental health difficulties than the general population. There has also been reports of difficulties accessing help from mental health services.
  
  This study will look at how autistic people understand mental health and any experiences they have had trying to get help.
  
  Why participate?
• 
  
• This research may be shared so can help mental health services better understand the barriers autistic people face. This could help them deliver better mental health support for people.
  
  Who can participate?
  
  The only requirement to participate is if you have a diagnosis of autism. You must be 18 or older to participate in this research.
• 
  
• You must be able to complete an online survey. You can ask for help to do this from a family or friend if you need to.
• 
  
• Please click this link to participate –
• 
  
• If you wish to get in contact about the study, me and my supervisors details are:
  James Liddell – [email protected]
• Emma Davies - [email protected]

 

[Crossbreed]

Hello & welcome, @jliddell279.
The members of this forum skew toward ASD1.
And any survey that requires literacy and introspection is going to skew the same way.
My 30yo, ASD3 daughter is pre-verbal with a mental age of 18 mos.
My 36yo, ASD2 son has a mental age of an 8yo, but with more executive dysfunction than his sister.

 

[Neonatal RRT]

@jliddell279, I did take the survey. I am from the US. I am a healthcare professional myself. I work in a 110-bed neonatal ICU. My wife, a cardiac nurse working in a large outpatient clinic managing some 2400 patients. I am also an older adult that has dealt with trying to access the mental health system. So I can look at this from a few different perspectives, pediatric vs adult, inpatient vs outpatient, and how insurance companies and access to services all influence whether or not any given person is able to access the mental health system.

I am getting the sense that the US and the UK are not that much different in terms of the ability to access services. There is much discussion on this forum, the compare and contrast, amongst our members here. Two glaring realities are major obstacles if you are an adult. One, once you turn 18-19, you are no longer under the category of "pediatric" and as such, any financial help you were able to receive earlier, is no longer available. The financial burden is now on you, and for many, it is simply financially prohibitive. Many simply understand they have "a condition" but are never going to see a professional. Two, even if someone has the financial resources, it could be several months before an appointment can be made to see a professional. Do understand that when people finally have "hit bottom" and are desperately seeking help, they want help now, not months from now. Some, once they understand the time element, they will not access the mental health system.

On the topic of mental health literacy, in general, a large number of threads are discussing different conditions. There are many of us that post links to journal articles in this regard. So many have questions, but one thing I do love about the autistic mind, in general, is the higher level of intellectual curiosity to ask a lot of questions. You may see a few of us out in public and might think, "This person is a bit of a mess." However, on the forums, you receive a better understanding of their level of intellect by the types of questions and how they express their level of thinking. You will never experience anything like it on any other platform. That said, we help each other out as best we can with evidence-based, peer-reviewed, scientific information when appropriate. I can say, for certain, that most of us that are new to the group are on the "low end of the learning curve" however, if they remain active on the forum, will gain a fair amount of useful knowledge in a short period of time.

 

[jsilver256]

I did not complete.

I abhor non-factual platitudes such as "mentally ill people are no more dangerous than others" and when asked this kind of leading question on a survey, my assumption is that it will be taken as "autistic people are uneducated about mental illness."

Violent offenders are far more likely to have mental illnesses.

Simple statistics - over-prevalance of mental illness in the violent offender population means mentally ill people are more likely to be dangerous. It doesn't mean I should start assuming the average person struggling with mental health is dangerous, or even likely to be dangerous.

Along similar lines - statistically, the most person likely to kill you is your spouse. It doesn't mean you should start fearing your spouse.

But wrapping that into a platitude like "spouses are no more likely to be dangerous than the general population" is just not factual.

 

[UFO]

In other words:

"Among group A likelihood of phenomenon X is twice compared to group B" -> So A has 2% chance while B has 1% chance -> Likelihood to not encounter phenomenon X is still 98% among group A compared to 99% of group B. Hardly noticeable difference...

 

[jsilver256]

Also, I can easily envision scenarios where I would judge someone as dangerous based on how their mental illness manifests. Take the stereotypical "the voices in my head are telling me to kill you," for example.

It is impossible to respond to a question like that.

 

[jliddell279]

Also, I can easily envision scenarios where I would judge someone as dangerous based on how their mental illness manifests. Take the stereotypical "the voices in my head are telling me to kill you," for example.

It is impossible to respond to a question like that.

Thats ok,

Thanks for trying at least. Apologies that you did not like the questions on the survey. In future I would definitely change the survey questions to be a bit better. I had to derive it from the mental health literacy scale that already exists.

This is my first piece of research.

Kind regards

 

[jliddell279]

@jliddell279, I did take the survey. I am from the US. I am a healthcare professional myself. I work in a 110-bed neonatal ICU. My wife, a cardiac nurse working in a large outpatient clinic managing some 2400 patients. I am also an older adult that has dealt with trying to access the mental health system. So I can look at this from a few different perspectives, pediatric vs adult, inpatient vs outpatient, and how insurance companies and access to services all influence whether or not any given person is able to access the mental health system.

I am getting the sense that the US and the UK are not that much different in terms of the ability to access services. There is much discussion on this forum, the compare and contrast, amongst our members here. Two glaring realities are major obstacles if you are an adult. One, once you turn 18-19, you are no longer under the category of "pediatric" and as such, any financial help you were able to receive earlier, is no longer available. The financial burden is now on you, and for many, it is simply financially prohibitive. Many simply understand they have "a condition" but are never going to see a professional. Two, even if someone has the financial resources, it could be several months before an appointment can be made to see a professional. Do understand that when people finally have "hit bottom" and are desperately seeking help, they want help now, not months from now. Some, once they understand the time element, they will not access the mental health system.

On the topic of mental health literacy, in general, a large number of threads are discussing different conditions. There are many of us that post links to journal articles in this regard. So many have questions, but one thing I do love about the autistic mind, in general, is the higher level of intellectual curiosity to ask a lot of questions. You may see a few of us out in public and might think, "This person is a bit of a mess." However, on the forums, you receive a better understanding of their level of intellect by the types of questions and how they express their level of thinking. You will never experience anything like it on any other platform. That said, we help each other out as best we can with evidence-based, peer-reviewed, scientific information when appropriate. I can say, for certain, that most of us that are new to the group are on the "low end of the learning curve" however, if they remain active on the forum, will gain a fair amount of useful knowledge in a short period of time.

Thank you so much for this response.

Its really insightful to hear how things differ between the US and UK. Also you have so much insight from your own lived experience and profession. Love it!

Its been really hard seeing how mental health services have treated autistic people here. The amount of autistic people coming through the emergency department at crisis point and dont get picked up by services is heartbreaking. Whilst I am only a novice researcher, I am hoping to try and address these issues in some way once I am fully qualified.

Really appreciate the time youve taken to complete the survey and respond in this thread! Keep up the amazing work you are doing.

-James

 

[jliddell279]

In other words:

"Among group A likelihood of phenomenon X is twice compared to group B" -> So A has 2% chance while B has 1% chance -> Likelihood to not encounter phenomenon X is still 98% among group A compared to 99% of group B. Hardly noticeable difference...

I have also included open feedback for qualitative data on the second part of the survey. Ill be honest, this is the part of the survey I am most interested in. Peoples lived experiences are so valuable to hear.

-James

 

[UFO]

Apologies that you did not like the questions on the survey. In future I would definitely change the survey questions to be a bit better. I had to derive it from the mental health literacy scale that already exists

Let's remember that most of people here are autistic and can be real stereotypical ones in some subjects. Like taking things literally without shades of grey

For example:

I dislike human language because of vague things like this.

While I do understand that "mentally ill people are no more dangerous than others" actually means that 98% vs 99% -case, it still pains me to think that it is not true - literally thinking. (Though I probably would just try to live with it and answer "they are no more dangerous than others")

Same thing when people in my workplace ask me to do something by saying "Do you want to do this task?" I can do it, I have resources to do it, I will do it because it is what I'm paid for... But I most likely don't want to do it as it is probably not my special interest...

 

[jsilver256]

Thats ok,

Thanks for trying at least. Apologies that you did not like the questions on the survey. In future I would definitely change the survey questions to be a bit better. I had to derive it from the mental health literacy scale that already exists.

This is my first piece of research.

Kind regards

Thank you. I appreciate the passion here. As @UFO said, we are quite prone to "taking things literally without shades of grey." Your survey questions are probably fine with any other demographic.

 

[vergil96]

No, it's not about taking things too literally this time, I think the tone and context of the questions about negative stereotypes and even crime is wrong. It's as if you were implying they're valid concerns. I mean, this is how I understand it. I felt uneasy about that kind of questions. There are so many questions to be asked and you picked those and they put autism or mental health conditions in the same bag as crime. Subconscious association. It's like in this joke:

A: I don't like you any more.
B: Why?
A: Last time when you visited me, I lost 100 dollars.
B: I didn't steal it, come on.
A: I found it.
B: So what does it have to do with me? I didn't steal you the money.
A: I found the 100 dollars, but disgust remains.

 

[vergil96]

You are asking for facts not opinions. It's not an autism thing, that would make you get a bad grade in high school final exam and it's reading with comprehension. You received answers to exactly what you asked. I'm not sure which population would answer differently, perhaps the one with poor grades at school and who aren't capable of graduating college? It irks me when someone says intelligence and competence is autism |(name calling? especially an illness, nice) instead of admitting they were wrong.

 

[Roisin]

@jliddell279 Can you please explain why the questions had to be derived from the Mental Health Literacy Scale? I am familiar with it, but having some context and warning would be better before people attempt your survey.
As you say in your introduction:

Research has shown that autistic people have a higher probability of experiencing mental health difficulties than the general population. There has also been reports of difficulties accessing help from mental health services.

"Handing" these questions to Autistic people experiencing mental health difficulties could have a re-traumatising effect, an ethical consideration I believe, as many have had suboptimal experiences with Autistic illiterate medical professionals.

 

[Roisin]

Hello & welcome, @jliddell279.
The members of this forum skew toward ASD1.
And any survey that requires literacy and introspection is going to skew the same way.
My 30yo, ASD3 daughter is pre-verbal with a mental age of 18 mos.
My 36yo, ASD2 son has a mental age of an 8yo, but with more executive dysfunction than his sister.

@jliddell279 This is a point I would also like to highlight: your results may be skewed and not inclusive.

 

[Neonatal RRT]

as many have had suboptimal experiences with Autistic illiterate medical professionals.

@jliddell279 ^^This^^

I've been in the acute care neonatal and pediatric world for the better part of 40 years. We interact with autistic children 24/7, 365 a year. Yet, these same professionals will not recognize their colleagues who have worked along side them for many years, as being on the autism spectrum. I joke around when I say, "I recognize a brother from a different mother." in reference to my colleagues on the autism spectrum, but the overwhelming majority of the professionals are clueless and attribute the behaviors as "moral" or "personality" versus recognizing it as adult autism.

There is an information gap present. Most people only associate autism as a pediatric condition. What happens when the child learns to adapt his/her behaviors to mask their autism as an adult? The reality is that they aren't any less autistic than they were as a child, but they are simply more intellectually and emotionally skilled at hiding it in an attempt to navigate the neurotypical world.

 

[jliddell279]

@jliddell279 Can you please explain why the questions had to be derived from the Mental Health Literacy Scale? I am familiar with it, but having some context and warning would be better before people attempt your survey.
As you say in your introduction:

"Handing" these questions to Autistic people experiencing mental health difficulties could have a re-traumatising effect, an ethical consideration I believe, as many have had suboptimal experiences with Autistic illiterate medical professionals.

Hello,

At the beginning of the survey I acknowledge this and signpost to helpful resources. This study has also been granted ethical approval by my university.

Apologies if this was not clear at the beginning of the survey.

I am using the Mental Health literacy scale as I am a novice researcher (this is my first piece of research within psychology). I have an academic supervisor who has completed extensive research on the mental health literacy of students.

I was able to include open ended questions about seeking help at the end for qualitative data as this is what I'm more passionate about If Im honest.

Thanks for your input though.

Kind regards

 

[Roisin]

@jliddell279 ^^This^^

I've been in the acute care neonatal and pediatric world for the better part of 40 years. We interact with autistic children 24/7, 365 a year. Yet, these same professionals will not recognize their colleagues who have worked along side them for many years, as being on the autism spectrum. I joke around when I say, "I recognize a brother from a different mother." in reference to my colleagues on the autism spectrum, but the overwhelming majority of the professionals are clueless and attribute the behaviors as "moral" or "personality" versus recognizing it as adult autism.

There is an information gap present. Most people only associate autism as a pediatric condition. What happens when the child learns to adapt his/her behaviors to mask their autism as an adult? The reality is that they aren't any less autistic than they were as a child, but they are simply more intellectually and emotionally skilled at hiding it in an attempt to navigate the neurotypical world.

The path of least resistance, eh? I try never to underestimate the human capacity for laziness; I wonder if there were financial incentives for inclusivity, would the same problem exist for colleagues?

One of the main barriers I've experienced is because I had to learn to mask for simple survival purposes; it is also one of the reasons my life will likely be shorter; as I'm burning through my finite energy, I slip through every crack and don't meet the criteria for support.
I completed the survey to give this kind of feedback.

 

[Roisin]

Hello,

At the beginning of the survey I acknowledge this and signpost to helpful resources. This study has also been granted ethical approval by my university.

Apologies if this was not clear at the beginning of the survey.

I am using the Mental Health literacy scale as I am a novice researcher (this is my first piece of research within psychology). I have an academic supervisor who has completed extensive research on the mental health literacy of students.

I was able to include open ended questions about seeking help at the end for qualitative data as this is what I'm more passionate about If Im honest.

Thanks for your input though.

Kind regards

I understand the necessary boxes have been ticked, and you are under pressure; I don't wish to add.

I suggest that you consider protecting a community you wish to study from harm in a more considered way, beyond the basic requirements, to build trust and respect with them.

For example, (this is thrown together) in your introduction, outline how the MHLS contains statements and wording intended to gauge a person's bias about mental health and, as such, includes statements you may find offensive; this is not the intention of my study. I am limited to using this wording, which I understand could be retriggering for those who have had negative experiences with these exact types of biases with medical professionals regarding Autism.

Perhaps your supervisor, considering their position of influence at an Oxford University college, could consider this point for future research.

 

[Neonatal RRT]

The path of least resistance, eh? I try never to underestimate the human capacity for laziness; I wonder if there were financial incentives for inclusivity, would the same problem exist for colleagues?

One of the main barriers I've experienced is because I had to learn to mask for simple survival purposes; it is also one of the reasons my life will likely be shorter; as I'm burning through my finite energy, I slip through every crack and don't meet the criteria for support.
I completed the survey to give this kind of feedback.

Knowing human nature (primitive primate brains operating in a modern world), I am not sure that financial incentives for inclusivity are the way to go about it. Sure, any business can be forced to meet certain inclusivity quotas and have a diverse staff, but, (and this is a big but), in doing this, are employers also being forced, in some cases, to NOT hire more qualified people? I am all for giving someone a chance in life, but there are certain situations where a meritocracy is better suited, for example, when lives are at stake. If I am a passenger on an airliner, it would ease my mind that this pilot has the intellectual and emotional capacity that exceeds the average person, that this person who is responsible for all of us, is most qualified. As an educator, I don't want to have different criteria for accepting students into a medical educational program. I want the most qualified, in part, because many schools in the US receive their funding based upon pass rate, which then becomes an ethical issue when educators have to "dumb down" the curriculum to achieve a certain pass rate, which, in turn, means the types of individuals being hired in the healthcare system are "less than", which, in turn, puts us all at risk.

The big ugly elephant in the room is that, for a long list of reasons, socio-economic, intellectual/mental health, etc. that some people, for no fault of their own, are at a disadvantage. That disadvantage often translates into less intellectual and emotional capacity to achieve the metrics needed to be effective in certain fields. Lowering standards for specific groups of individuals and meeting quotas, as well-intended as it is, then becomes discriminatory against people who are most qualified. So, how is that solving any real-world issues? It's making it worse.

Knowing how the typical human reacts to others who are "different" in some way, we need to address the real issue, that being ignorance. The unknown triggers our primate brain (more specifically, the amygdala) to have fear, and fear can be manifested in many different ways from avoidance behaviors, to not creating social bonds, discriminatory behaviors, to all out aggression. Address that component, enhance understanding, minimize ignorance, minimize fear, and you will minimize discriminatory behaviors. If you want to change things with humans, you have to change culture, and not through some sort of well-meaning diversity, equity, and equality program that is forced upon them. Fix the problem, not the symptom.