If we could design it ourselves, what would AS services look like?

I got a formal diagnosis this year - 25 years after taking the AQ test (39) and nearly 60 years after I was first referred for assessment as a child - it's been a bumpy ride! I've had some amazing help from my local authority AS services around employment but I've been a bit surprised at how little AS people are actually involved in the service and it also seems that there's very little ongoing support for AS adults. It also seems a bit of a lottery regionally.

Meanwhile, we have researchers cruising the forums looking for input on the latest app or conference. Again, none of them seem particularly keen to do more than get input on their own ideas - we don't get 'invited to the table'. All the apps I've seen look as though they're for children. The diagnostic process is designed for children. Services seem to be very vague on high-functioning adults?

This NAS forum has been a life-saver in floundering around post-diagnosis and it feels ungrateful to moan - but it's very far from perfect for HF AS adults and, again, there seems to be very little involvement on the part of AS people in defining the service.This might be partly as it started off as a service orientated around parents - it gives the impression of being very much by-and-for people *around* AS people rather than AS people themselves.

So maybe we need to be a bit proactive?

What sort of resource, spaces, support would you have liked (or would like now) that you haven't been offered?

  • I very much agree with your observation about the lack of support for autistic adults. From my personal experience and from what I have read from others who posted on this forum, I do think it's unfair that the diagnosis and support system is like a regional lottery. I also agree that it's unfair how much they are focusing on children and not n adults - both are important, and both should be treated seriously. In fact, there are more adults in the world than there are children, and children become adults eventually, so continuous support and diagnosis services are necessary. Given that waiting times can be 2-3 years in some regions to get an assessment, it reflects very clearly how many people are in need to support, yet how the current resources are not good enough to meet the demand. 

    If I could design a support resource for high-functioning AS adults, one of the things at the top of the list would be to increase awareness and diagnosis services, so it can give people the opportunity to know about autism and decide if they want a diagnosis. The way I would do it would be to have companies circulate a work email to everyone informing what autism is, and provide a link to a screening questionnaire (that can be send directly to GPs digitally online), and instructions on how to proceed if they decide they want a diagnosis. I think a problem for many people is that they have struggled a lot in life, but they didn't know that their difficulties were due to autism. These advertisements to everyone will provide people with the opportunity and steps to find out quicker than they might have.

    Another resource that I would like to have would be life skills development summer camps. They have a lot of these summer camps for AS children and teenagers in the U.S., but there aren't many for adults. It would be very useful to be able to attend a 2-week summer camp, where they can teach some basic life skills and provide some team-bonding training. It would be a great way to make friends and learn skills.

  • Better than they currently are!

    Seriously though. Although on the one hand I do recognise that the NHS is hugely under-resourced and massively over stretched but I also think that services for those of us diagnosed with ASD as an adult are very much appallingly non-existent! I find it ridiculous that despite my having dual neurological diagnosis with both ASD and ABI, there is no post diagnostic support available to me simply because my mental health is very stable at the moment. Surely the mental health services treat people for mental health problems, AS services should be for people with AS regardless of mental health status, they can always cross refer to mental health services if they need to. Literally this forum is my post diagnostic support and the only source of post diagnostic support that I will get so please excuse me while I utilise it to maximum effect! 

    So, as to what do I think adult AS services should look like: Ideally there should be support groups in every area, separate from social groups. These should be run but someone from the local autism services and should perhaps cover a different topic that people diagnosed with AS as adults may be struggling with. Even if they only ran once a month, it would be good to have the option to be able to go along, learn new information, meet other adults newly diagnosed with AS and swap ideas with both them and the person running the group.

  • Lack of support for autistics

    I, therefore, feel the lack of support is not singular to autistics but universal to anyone reaching out for help. The policy is, "wait until something breaks". Western healthcare is about fixing problems not stopping them.

    I agree that there is less focus on adults, or accelerating the diagnosis process.

    Under the autism act https://www.legislation.gov.uk/ukpga/2009/15/contents undiagnosed autistics get a rough deal as well. There is no incentive to do anything in the interim for anyone. Even some organisations use the act as an excuse not to help. Because they think they only need to help you if you have a diagnosis. They forget the care act and the equality act for example;

    - I was told by social services that they were not sending a trained person from the autism team, "because I did not have a diagnosis". It is unlawful to discriminate on the basis of diagnosis when someone has the same characteristics and impairments as the diagnosed person. (Equality Act)

    - I was told by the autism advocate that he could not help because he was only funded to deal with people with an autism diagnosis. He bent the rules and gave me a couple of hours anyway.

    - Support staff, healthcare and social services - treat you like a crazy person. As many ASD characteristics look like mania, PTSD, OCD, Psychosis, Schizophrenia, Even though you have not been diagnosed. I have been reading a lot about misdiagnosed people and there good paper here https://www.mhfmjournal.com/pdf/how-and-why-is-autism-spectrum-disorder-misdiagnosed-in-adult-patients--from-diagnostic-problem-to-management-for-adjustment-.pdf

    or if you like html here https://www.omicsonline.org/open-access/misdiagnosis-of-high-function-autism-spectrum-disorders-in-adults-an-italian-case-series-2165-7890.1000131.php?aid=26558 . 

    The tables are very interesting.

    Case # Misdiagnosis Age at diagnosis of ASD Symptoms at onset Possible reasons of misdiagnosis
    1 1.Behavioral Disorder
    2. Avoidant Personality Disorder
    19 years Difficulties  in social interaction, especially in group Focus only on difficulty in social interaction without integrate this symptom with patient impaired communication and narrow interest, presents since childhood
    2 1.Language Disorder                   
    2. Behavioral and Emotional Disorder
    20 years Difficulties in verbal communication and then in social interaction (loneliness) Focus only on a part of clinical picture (deficit in social interaction) without integrate this symptoms with patient impaired communication and narrow interest
    3 Social Phobia 19 years Difficulties in relating with others, especially at school No psychiatric history as to the quality of patient relationship with other children had been collected in detail. Nobody observed an unusual way of speaking (logorrhea not related to mood disorder) and difficulty in understanding communication from others, especially in the non-verbal channel.
    4 Depression 23 years Life in loneliness Focus only on a part of clinical picture (deficit in social interaction) without evaluates restrictive interest and deficit in non-verbal communication.
    5 Anxious-depressive symptoms 47 years Anxious symptoms related to social context No collect a detail developmental history: difficulties of patient began in childhood relate to a deficit in social cognition. Secondary mental disorder was considered principale symptoms.
    6 Anxious Disorder 17 years Vulnerability to stressful life events and social distress Secondary mental disorders, as marked traits of apprehension, occasionally manifesting in free-floating-anxiety or anguish with persecutory ideation, were misdiagnosed as the primary disorder but it might be result of deficit in social communication or of her propensity to ritualize and repeat that cause social conflict


    So maybe we need to be a bit proactive?

    This is the only way. 

    Under the autism strategy, and care act we have a right to inform local services. And the have to listen. You are right.  What tend to happen is higher ups look on here and say it's their idea. We should approach our LAs and tell them what we want. I think the NAS surveys are too far between. They should have a person who just deals with advocating for autism by listening to people with ASD.

    What support would I have liked?

    Now - undiagnosed autism 43 (see below)

    Summarised as tailored help to navigate the law, health, my mental health and idiots.

    1. Continuous hand-holding. A support worker who follows me around making sure everything is okay and organises everything I ask for and make sure that I don't forget anything, yes a secretary.

    All this patient led b******* is code for, "if they don't ask don't suggest. And we save money"

    2. A single patient view/overview. I can look at the status and projected status of all the requirements and needs that I should be and are currently receiving.

    So much is hidden behind the knowledge of how these systems work. It should be as simple as logging into Facebook, and selecting I think I am autistic (if you can remember the password)

    Then it should say, are you experiencing x,y,z, 123.

    Then please go to your doctor with this sheet.

    Then please wait 7 days before checking in with the progress. (or not even that - doctor calls or text or writes and says what the F is going on.)

    3. Access to health, counselling, whatever

    4. Someone to talk to. and feel listened to and then help me take action or act on my behalf with instruction.

    5. training for everyone now on autism.

    The way I would do it would be to have companies circulate a work email to everyone informing what autism is, and provide a link to a screening questionnaire (that can be send directly to GPs digitally online), and instructions on how to proceed if they decide they want a diagnosis. I think a problem for many people is that they have struggled a lot in life, but they didn't know that their difficulties were due to autism.

    misdiagnosed as social anxiety 38

    Secretly I have been diagnosed as not autistic - It was her first year as a clinical psychologist, she had only diagnosed children, there is no paperwork, I do not think she is still working the clinic was shut down. I have requested the paperwork. This has led me to believe with some posts that I am quite autistic and have been misdiagnosed. Sorry to have kept this from anyone but it feels a relief to say it.

    Then - dyslexia diagnosed at 20

    At another diagnosis related to autism, that they are referred for autism screening. The related ones are dyslexia, OCD, etc.

    Way back then - School screening

    Quiet unsociable children are referred for screening. Some kids actually don't know they do not have any friends. And think their classmates are their friends. Also, children may have an imaginary friend. Which should not be treated as insanity but loneliness brought on through isolation.

    [Edited by Moderator]

  • I would like to see more awareness in schools, further education and the workplace.  Also definitely more support for older autistics. 

    What I personally feel i need:-

    A co-ordinator to act as a kind of hub for me and signpost me, reliably and promptly, to services that can help with my specific needs.  This co-ordinator should have been assigned as soon as autism was mooted, and seen me through the whole assessment process, advising and drawing on other services as we went along.   A detailed, agreed plan would help.  

    Family support:  For me autism is a family issue and once one person is diagnosed, others should have the offer of assessment straight away.  In our case it's clearly also affected the family dynamics in anumber of ways so this should be recognised and acted upon.  Too many individual issues dealt with by separate departments, with no autism awareness and no joining the dots.  I don't understand how this can happen.    

    Psychological support:  Individually tailored psychological support involving a detailed assessment and formulation of my issues,t he maintaining causes and a collaboratively constructed way forward.  The support MUST be informed by autism awareness and NOT off the peg IAPT-style brief interventions.

    Workplace support:  Again individually tailored and bearing in mind where i am now, not what most (usually younger) people might face starting out or basic information on very obvious and relatively minor adjustments that i could clearly read about myself after a brief internet search.

    A standardised process for garnering all of this support - clearly, national standards that we can expect will be adhered to from assessment to diagnosis and beyond.  Again, i don't understand why this isn't already there and why, once diagnosed last year, i felt like a kind of test case when the CCG asked for my thoughts on the process to feed into their new autism strategy.

    Understanding of my "high hopes" instead of an incredulous smile.         

  • I would like there to be available Professionals who understand ASD and actually listen, process what is actually said and guide us of all ages to develop, be independent as possible (which is probably individual) and generally for such professionals to be educated in ASD as well as other mental health/medical problems. 

    In the long run it’s cheaper for the NHS etc to support individual development rather than dish out psychiatric medications long term (if and when inappropriate) and benefits. Plus addiction support, obesity treatments and treatment for whatever else people do to themselves to cope or dampen the agony. 

    Also an acceptance that people are not ASD OR Depressed OR Schitzophrenic etc etc. I appreciate we have an NHS, but if anything could be improved I think the word might be holistic? Ie treat the whole person, not just one diagnosis. I do appreciate doctors aren’t computers, though. But it’s chicken and egg story - which came first? For example did Autism cause depression? If so, support with the autism seems the best way forward. Of course, the depression needs treating too. It’s a very individual thing in my opinion. 

  • I love your suggestions.

    This is all recommended in the autism diagnostic pathway. It just never happens, it all is there but seems so ambiguous. It's clear there needs to be transparent and clarification of the process for everyone. And like you said it's new and therefore novel. Aslo a few medical staff are ASD.

    I'm going to print some of these and take them to my doctor. and ask what should be happening for me. Basically everyone knows they have to take care of you but they can't descide who it should be. The landscape is confused with jargon and buzzwords that don't really lead to actual help. I'm glad this thread was started.

    I can see that the last questions on the autism professecional network that have gone unanswered. https://network.autism.org.uk/discussions/diagnosis 

    The NICE plan.

    - If you are undiagnosed you require diagnosis and management - 

    - If you are diagnosed you require management - 

    See for yourself - https://pathways.nice.org.uk/pathways/autism-spectrum-disorder

    Autism spectrum disorder in adults: diagnosis and management


    NICE picture flow chart - https://pathways.nice.org.uk/pathways/autism-spectrum-disorder#path=view%3A/pathways/autism-spectrum-disorder/identifying-assessing-and-diagnosing-autism-spectrum-disorder-in-adults.xml&content=view-index

    Managing autism spectrum disorder in adults

    NICE picture - https://pathways.nice.org.uk/pathways/autism-spectrum-disorder#path=view%3A/pathways/autism-spectrum-disorder/managing-autism-spectrum-disorder-in-adults.xml&content=view-index