Autism - A Diagnosis in Adulthood

and everyone as we recognize some familiar faces so yep today we're going to think about autism and as a diagnosis in adulthood so people who have had a diagnosis in adulthood and we're going to try oops oh yeah think about actually why now why now do people come forward for a diagnosis when they're an adult a little bit about autism spectrum disorder and a new DSM criteria what the nice guidelines say about diagnostic procedures and the advantages and implications of having a diagnosis and how someone might adjust to their diagnosis as well and also the types of support that are vital when he supports them on with a diagnosis and to out you'll hear me talking about the autism strategy does any of you know that actually the latest update was published yesterday yeah so in terms of the NIA autism strategy that thinking about within contrarily autism Act now has been updated as from yesterday and that basically details or give recommendations to local service providers local authorities about the type of services they should have in their local areas and also the rights of some on the spectrum when they're an adult experiencing autism spectrum disorder so it's there it's a useful guide if you want to access it and I'll briefly be touching on that but if you'd like to know anything more then we can also provide you with a reference as well so autism is much more common than people think it does affect 700,000 people in the UK so roughly it's about one in hundred that we know about he writes a hidden disability so you can always tell that someone has it and that's particularly the population that we're going to be talking about today and is a neurological condition so and like we talked about yesterday if you compare someone a brain scan of someone with autism and without autism there are very clear neurological differences and that explains why someone might see and view the world differently than maybe someone who is neurotypical now autism okay so it's a spectrum condition so although some people share similar difficulties the condition will affect them in very different ways I've never met anyone that is the same everyone is unique some people can have independent lives but some people might need lifelong support including those people with very high IQ and intelligence as well that's often a myth around autism spectrum disorder now the reason why I've briefly and we mentioned in these points is just to for you to hold this in mind as you go along so people have probably familiar with Asperger syndrome so many of you know from from our talks that we no longer give the diagnosis of Asperger's syndrome so people who have a diagnosis of Asperger's syndrome that still that's still viable that's still an important diagnostic but anyone who comes through the diagnostic procedures now will automatically be get given an autism spectrum disorder diagnosis and that's really because if you think of the spectrum it's a wide spectrum here but nearly everyone on the spectrum will whether they have eye IQ or surveillance abilities will be affected by things like communication social interaction difficulties maybe things change know not to expect maybe have sensory difficulties so wherever you are on the spectrum you might have similar things in common now the reason why those changes to the DSM criteria is to eliminate that myth really because there's all sorts of myths around so at one point even things like financial and support opportunities people with a diagnosis of Asperger's syndrome in some parts of the country couldn't access benefit entitlement couldn't access support because merely of a label of our spurgeon syndrome and the myth around that so just briefly about the DSM and what the new DSM criteria says so it's a little bit dry so forgive me the DSM is a diagnostic Statistical Manual so psychologists and psychiatrists we use classification systems now the one that we use is the dsm-5 and that was updated last April so anyone who had a diagnosis Attalus April will have had a diagnosis of an autism spectrum disorder anyone prior to that will have been using the old DSM criteria DSM 4 and that would be Asperger's syndrome it may have been and of the autism spectrum disorder anything pervasive development disorder on the same kind of umbrella but firstly when we're a clinician we have to think about the first one so the person would have to have persistent difficulties in social communication and social interaction across contexts or not just in one context but over the different contexts and Italy they need to connect Nissim be manifested in any of well all three of the following so difficulties in social emotional and repulses who did gonna say that give a mouth around it but that's in terms of kind of things being reciprocal and difficulties in nonverbal communicative behavior such as social interaction so if you think of conversation and when you interacting with someone it may be that if you think of non communication we're thinking about facial expressions body language tone of ice all those different nonverbal sides of communication and we know that lots of people in spectrum not only struggle to interpret those nonverbal sides but also as well they may struggle as well in terms of addressing their own facial expressions doing what to say what to do how to position themselves in different contexts and also difficulties maybe developing and maintaining relationships and friendships over the lifespan so we want to see that the person has difficulties in all three of these areas now the second part is the person may well will have difficulties with restrictive repetitive patterns of behavior interests and activities by two of the following so we're looking at - someone may have stereotyped motor movements they may have an excessive adherence to routine or maybe ritual patterns which relies patterns of behavior and/or maybe kind of difficulties with with change a person may have sensory difficulties sensitivities interests as well that might be heightened and/or as well it may be there may be almost kind of almost like a fixated interest or hobby that might be quite intense in nature so we're looking at two of the following of these now what we do need to find out is that these difficulties have been present over person's life span so what we think about when we diagnose someone with autism is the evidence behind a person's diagnosis so summers diagnosis or some was difficulty started at 20 what we know is that that might not be a neurological condition there may be other things that might explain that person's difficulties anxiety for example OCD many people come forward who might have extreme anxiety or OCD they're quite common when actually it may be actually their anxiety and experiences that explain an anxiety in OCD rather than actually being on the autistic spectrum so we need to think about and normally we think about probably around probably from around four and five years old really upwards we're wanting to find out a person's developmental history we need to know that that person it may limit their or impair everyday functioning so what we know often is that lots of people spectrum may struggle in everyday life things like it maybe with doing their job or maybe within their relationships friendships may be socialized isolation but also these not explained by anything else so like the anxiety in OCD scenario that it's not explained from something that may be psychological in presentation but also a learning disability as well so we're always thinking about if there are other things that might be going on let me think about a diagnosis so receive a diagnosis of ASD is a huge impact on the individuals life and those close to them so actually why now it may be often the person may compensate them intelligence system is very very bright school and often the teacher might see their intelligence and that actually may shadow their difficulties and also as well in terms of intelligence often when you are intelligent you can think of different ways of of coping as well then maybe if you have a learning disability maybe hard to think of the other ways of coping and masking your difficult is it might not have been picked up in school because again if you think of many years ago well how we thought about autism often we thought about it's a stereotypical version of autism almost like calles autism the learning disability version of autism so especially and the educational establishments we were often thinking about autism in almost kind of that can a framework you're right in terms of a well supported support system it could be I've worked with one particular individual recently whose mom did absolutely everything for that person to the point then that and she just naturally because she was attuned to her child's needs you know she didn't even question it so she would regularly help him with planning and organization and eyes on the phoned him prompt in him because of his memory difficulties and that she would encourage her other son his brother to engage him in his friendship circles so all this kind of scaffold and that was around so to the outside person actually he looked like he was functioning very well but actually when that was removed often when especially when someone goes to university after and if you think of some other support system that's when a more social demands are placed on someone you might start to see actually more autism specific characteristics of behavior any right there may be a confusion with other something else that's going on because actually other people with autumn's can also be prone to all sorts of other things that there's a talk on tomorrow about autism a mental health because mental health difficulties early it's really common for some of the autism to have also other things there that they might experience but if the clinician who is working with the person and who is diagnosing the person who's not familiar with autism then they may think through a mental health eye rather than an autism eye and also there's a huge empathy debate we touched on this yesterday one of the talks but I've worked with many women actually who have said now it was questioned if I had autism but they said I had empathy so I didn't meet that meet the criteria when actually what we know is empathy is much more detailed than what we think there's many characteristics of empathy so again Simon baron-cohen is revising his theory on empathy probably the population that we're talking about today he's probably moderately functioning so it may be that the person the people close to them know about these difficulties and they know that they might have difficulties meeting and maintaining friendships and relationships they melt an isolate themselves and find social interactions difficult they may have difficulty sustaining employment and may have reoccurring health difficulties so they might actually be known to mental health services and might have been known to mental health services for a long time now also why now is we actually know more about autism now so we're more aware so things like events like wheeled autism week are designed to raise awareness of autism so it's clinicians professionals individuals carers family members we're all thinking about autism and we're thinking about the people who who we love our support so we now more aware that autism just doesn't affect people in learns ability it can affect people who haven't got loads of lifting as well now often we have found especially in the past that people might not have come forward for a diagnosis because of stigma because society thinks that people with autism may respond in a certain way and after knowing that people on the autistic spectrum who said I want a diagnosis because Society will think x y&z so that might limit people coming forward for a diagnosis but again because we're now raising awareness of autism hope hopefully that stigma will break down now how Lynn and ash Gary um said that many people might have experienced a long waits for a diagnosis due to present presentation of very subtle traits so especially women and I'll go on to women as well women are much harder to diagnose than males on the spectrum now again it's also hard as an adult twin tongue entangle if someone has social communication difficulties it's hard to entangle what where where did that come from because what we know as well as often when you are on the spectrum actually going through the school process and the educational process is traumatic in itself and it's going to create fear it's going to create anxiety it's going to create all sorts of problems as well and also you're an ability to things that bullying also is increased so coming on to females with with autism now there's a lot of potential theories of why females are harder to diagnose now if you think of if you look at the statistics the statistics often say that people who are males are more prone to autism than females yeah yeah yeah I think it may be a possibility but I think that actually it's harder to diagnose women that's why the statistics are not reliable now because of the the male gender Maya a bias girls are often Mik that I've missed so much more likely to see females in mental health services on the spectrum because often collisions are not thinking about autism actually might be a parent because actually know that that's something that males have and females if you think of a female growing up females become masters at Millikin and just copying their their peer group because from a small child a girl has to interact with another girl they have to think about their girls are always generally more chatty aren't they if you think of kind of a group of small girls and a group of small boys the small boys go off and play football I don't know you know they go off and play sport and whereas girls are they're very much back with their dolls they're very much about Canaries route and almost kind of acting out scenarios so girls much quicker get actually game almost kind of learn ways of coping but actually that's why often females do end up with much more kind of a severe anxiety and depression also because of that because of the amount of energy it must take to mask being on the spectrum is absolutely exhausting so we talked about that yesterday didn't we about kind of if we think of social interaction and we think of the layers of what social interaction involves so you have to kind of look at someone you have to position yourself you have to make sure your body language is not kind of and offensive but you have to kind of turn to them you have to listen you have to turn take a specificall you have to be interested all those different layers of social interaction that often someone who is neurotypical almost care takes for exam and FARC and I grunted but that's why it can be so exhausting so if it's so exhausting Danny you know that's probably going to make you feel pretty pretty frustrated a little bit low and kind of pretty hopeless really at time so that's why often people with autumn's can experience really high really common for someone to experience anxiety and depression and we will go into more about that tomorrow if you're interested in that talk and and again you know it possibly might explain that in the high statistics of women with ASD with mental health problems but actually I am eating more and more and more men the spectrum will also have lots of difficulties with myth mental health as well but again that's a separate debate around gender and men coming forward for psychological therapy and all that the bias around kind of gender and stereotypes around therapy so how do adults get referred for an ASD diagnosis so this is often we Oh normally get lots of calls on a daily basis at you Accenture saying how do I get a diagnosis um you know where does that and so we normally said yet suggest to speak to your GP I'll speak to a medical professional who can make a referral now there's key bits of legislation that's important to use and the National Autistic Society you've got a really lovely page about kind of what to actually go and what to say to your GP and what sorts of legislation to talk about but use a nice guidelines which is what I'll come on come on to and describes a nice guidelines say that if you have difficulties in the following areas which we'll explain then you are entitled to a diagnosis now use a new updated autism strategy as well which talks about that every local authority must have access to an easily accessible service and again giving guidance about using the nice guidelines about referrals because what we do know especially in New York or North Yorkshire area is that autism diagnosis in Elwood are being commissioned so it's about often it's about your GP being educated and we often have conversations with GPS about their own awareness of autism and also about helping with the what to put on a funding application and and of course you can pay privately but it's important if you do pay privately for a diagnosis that the clinician uses the nice tool all the tools that are recommended by nice so if you think of if you need a heart operation or if you need any sort of health or therapy you often as a clinician you would often consult the nice into the National Institute of Clinical Excellence because that's particular framework and guideline for a clinician to say these are the types of tools that have the most evidence base yeah okay and of course autism house its own guideline so and this is the reference there if you need it but this is why it's important to know about a nice guideline because it's there as well to be able to use when someone wants a diagnosis so in terms of what it saves around identification assessment it's always important the clinician to consider whether this person has one of the following difficulties so you can go to your GP and say well I know the nice guidelines say this or this I know that I have resistant difficulties in social interaction or I know that communications are difficulty for me or I know that people have said to me that I struggle with change our routines important and I struggle to cope when my routine is changed or I might have restricted interest which means often lots of other parts of my life will often be affected also as well the nice guy does talk about actually then saying maybe one of the following so if you've had trouble sustained employment or education if you've had difficulties initiating I'll sustain the social relationships if you've had previous or current contact with mental health services or if you've already got a history of a neurodevelopmental condition such as a learning ability ADHD or another mental health difficulty so there's things that you can actually go to your GP and say well I'm having difficulties with social interaction and it's really impacting on my education or my employment so you under the nice framework you could take that information say I know that the nice guidelines would then recommend me going for a diagnostic assessment now what the do they in terms of nice guidelines we talked about it talks about screening and we also think it's important to shoot center we offer screen appointments as well now the something as a GP the GP can use the a q10 we use the aq the longer aq at the shoot center so we use the aq the EQ and the relative questionnaire almost not necessarily just in the screen but also way of prompting discussion with the individual and we see them for the first time but you will probably normally see that someone who and doesn't kind of have a surveillance video today then they're probably almost kind of score probably a bulk in ethics and the aq is downloadable as well from the internet it's free to download so you could actually are the person you support you could support them to go to their GP and say look on the AQ there's a nice guidelines say x y&z now the tools that are nice recommend are these following tools it might be hard to see for the back so you've got the the Triple A I don't know that's enough we use that in a screening because again you know you need to be thinking about observational side of things and also developmental history to be able to then correspond because you can have not only got the nice guidelines we've also got the dsm-5 as well and the swing compatibility is there but we always have to use the dsm-5 as clinicians we can't deviate from that is the autism diagnostic interview which is the ADR and I'll go into that more there are some diagnostic observation schedule the a dose the Asperger's syndrome and high-functioning autism diagnostic interview and obviously of course that's not necessarily reliable tool now because of the changes and also the ravit oh autism Asperger diagnostic scale the following tools are particularly useful for people learn spirity also people with quite complex presentations as well if they've got mental health difficulties so the a dose and the ADR and that's the two that we use so lead us to some of you might recognize this but this is what the a desk f2 looks like yes now the a dose two is since it's an observational schedule so the clinic clinician has to have trained it's a five-day training they have to go on to actually be able to use the a dose reliably and clinically so it consists of a series of tabletop exercises so this is a particular almost test as well that it's not tasking but there are particular activities and that you will go through that will invoke certain responses that are compatible with an autism diagnosis so there's certain things that we look out for so it's an observational module it's not actually what you think about in terms of the task so you know in how well you do on the task it's actually what we observe so things that I contact facial expressions body language how the person thinks about answering the question does that make sense I've been observational and that will take place between the examiner and the individual and probably lasts up to about night it but not sixty minutes actually but it assesses the four main areas it's in the DSM so language in communication reciprocal social interaction imagination creativity and stereotypical gives patterns of restrict interests as well so we have to demonstrate than in the a dose that people have difficulties of all of these areas or observations in all of these areas now the chook Center we use the a day are as well because night the DSM says that we have to have a clinical history it's important that we have a developmental history now we use the a day axe again that's a particular assessment here it's quite a lengthy booklet but it has again the reason why we use e a dose and year dr is because they're the tools with the most evidence base in terms of reliability for assessment now this goes right back to someone when they're really small and we're asking someone's parent caretaker or some or family member who have known them from such a young age to be able to report on on their difficulties growing up so it covers early developmental history and we want to be able to see the for the person we need to have known them from about four or five because what we know from that age is the person is then starting to have more social demands that are placed on them and especially those who find easier or find ways of coping and masking at four and five years old they may have not kind of developed those coping mechanism that point so that's why we think about that particular age now what are the benefits of a diagnosis that's what many people ask I call up and say well I'm an adult Oh what what difference would this make to me if I had a diagnosis now often this is what these are the things that people have talked about so it can actually be a great sense of relief for the person that actually finally there's an explanation behind years and years and years of difficulty and or even kind of almost can misdiagnosis as well lots of people are spectral probably have a few different diagnoses about it also opens pathways our furthest apart so for example psychological support now as a clinician as a psychology so I can work across the different presentations but with autism I work very differently with someone in psychological therapy than I would with someone with a different presentation so again it's really important for a clinician to know someone's on the spectrum so they can gear their approach to the individual because again it may be that therapy might not be able to be adapted to the person's needs if it's not uncover because again if fingers are some therapies that try to reduce someone's difficulties when actually what we know is many people on the spectrum this may it's the lifelong disability isn't the people will often experience these difficulties for all their lifespan all we can do is help to with strategies and help to alleviate often stress or crisis points as well under the Community Care Act 1999 so also also under the autism Act as well and says that once you have a diagnosis you entitled to have a social care assessment so whether you have a lens video whether you're very very high-functioning because even I've worked with someone who was a lecturer it was very very high functioning but he needed lots of support at home so he had a pa pa so he was entitled to have it have PA a PA to help him with his difficulties on a day to day basis and also as well someone may be entitled to welfare entitlement where we think of their kind of pick payment as well and again the PIP payment is quite an interesting assessment tool in itself and we often work with individuals to think about actually how they can phrase our difficulties within the set questions that are often given in the booklet but it's a kind of knowing what to say because what we do find is often lots of people in the spectrum or finding and accessibility are you just going out trains and buses all those things really difficult to get a taxi or to get it's actually really expensive are those things so there's there's a lots of entitlement there and we work with one particular person who wanted to go to university there were so many different obstacles in his way to be able to get to university but the PIP payment enabled him to to be able to pay for a taxi or pay for train ticket outside of the times that wasn't cheap so he could actually get to university and enjoy his time there and as many of you know and autism is now registered at disability under the Equality Act as well so employers educational establishments and services all have to make sure they're making reasonable adjustments and that's right you hear here and after the chooks and do we have to always think about how are we making reasonable adjustments for this person so for example we're running a social skills group for people with autism and to be able to help people learn the skills around social interaction about the rules around social interaction and cost this particular group that we're working with want to be able to a socialise want to be able to use social interaction in their ways be able to meet their dreams and aspirations now often in terms of our is an adjustment we found that lots of people found knowing what to expect was really difficult so we actually provided an accessible information sheet with photographs of the facilitators photographs of the room we even invited them in beforehand so to talk through the structure even introduced and to the room introduce them to the things around them so again all trying to make reasonable adjustments around that person's needs lots of things you can do to support people spectrum to make day-to-day life easier now when someone has a diagnosis adjusting today a diagnosis can also be an emotional rollercoaster and and it can be a really emotional time as well for family so not just individual but whether they're a partner or a family because everyone Oh screw that emotional rollercoaster now the individual may experience happiness relief frustration sadness anger and and all these feelings understandable based on the diagnostic process if you've not been diagnosed until you say 60 now you probably don't look back through your life and think I'm really frustrated why wasn't it picked up angry because of that frustrated letdown or it could be now you've got a diagnosis and you know that these these difficulties might lifelong that that might actually feel quite sad but then are they offers it's I'd you then maybe a great sense of relief finally you can get support you need finally actually maybe other people will understand my family will understand my relationship and a partner will understand and we often give this particular transition curve to people who come through the diagnostic process you have to forgive us because I couldn't find one actually that was big enough that you might not be able to see but I'll kind of talk you through it you think of when someone's coming in for the diagnosis people can often go through a rollercoaster of different emotions so the first thing might just complete just denial I'll just kind of not feeling anything not feeling kind of any difference and then it can be no that's not me no that doesn't make sense that's not me a can be anger being quite low right down to what's the point but then as slowly as that person starts to accept the diagnosis again it can go up again and if you see the kind of cycle here there are actually in a much better place long term having a diagnosis but they might have to go through emotional rollercoaster in the first instance so that's where post Diagnostics are part is really important so with all of our diagnostic assessments that we do at the chooks Center any of our funded diagnostic assessments we actually include a follow-up session within our diagnosis because again it's really important that you don't just actually give some they're diagnosed and say okay you go goodbye but we're also we also ask commissioners to fund post diagnostic support sessions as well so as part of the diagnostic report we will actually recommend at further support depending on that where that person's needs are at so it's a diagnosis in itself can bring so many questions to mind and with lots of different things that might come up parents because well many questions to parents mind is it my fault is it something I've done all of this all of these types of questions are normal with any diagnostic process so the post diagnostic support sessions really can capture those questions but also help that person transition through that emotional rollercoaster in a way that's not going to affect their mental health as well so strong post Diagnostics apart has been shown to improve quality life long term reduce anxiety and depression long term because finals persons not blame themselves anymore not giving themselves a hard time because actually something explains what they're going through and also it decreases the use of high acute hospital services so this is going to statistics from the national audit service so for those people who may always hit crisis point and always end up in A&E always end up in inpatient mental health services actually having a diagnosis can be really really important now there are some implications of a diagnosis you can see now when we meet someone for the first time we have to always ask these questions because sometimes it's about timing with a diagnosis it might not be the right time for someone be careful of elevating risk because if someone has a lot of risk and to keep themselves safe then if they're going to have to go through that role at motional rollercoaster then you're going to have to make sure they have a good solid support network around them but also it's important to manage expectations and limits of what the diagnosis can do because it doesn't change anything in terms of their everyday functioning but what it does it can help them feel and think about things differently they may still say to have the same difficulties so again it's about managing expectations because some people can come with expectation I'll get diagnosed and that's it everything's going to be great if it'll be fine it will be better and you know we've worked with lots of people by how their diagnosis is opened up so many doors for them around psychological emotional welfare social care support reasonable adjustments in the workplace of course it's going to make a huge difference their quality of life but it's just managing that expectation and also involving families and support networks in post Diagnostics apart because again and if that person then has to go back to their family and explain them they might be still struggling to make sense of it themselves and it might be hard for families to reflect on that and also as well families may have their own emotional attack or kind of interpretation of that so it's be able to catch those things as well so the person is fully supported now there's a little bit about patient feedback about after being given a diagnosis so people have said that it's been such a relief one person said that it saved his relationship so into a particular case that I talked about yesterday the guy was always getting in trouble with his wife and actually saved their relationship because we ended up doing some work with them as a couple so then they almost kind of she understood him a little bit better and kind of adapted how she could adapter can himself to to her relations their relationship and also he understood why maybe his wife was getting upset as well one particular person said well now hire a job I love because this particular person was in a job and he was actually going to get the sack and and you work long name this particular company but it worked for a particular company where now they've actually really embraced his diagnosis and is in now a separate part of the company where he's actually talking to other people about autism and supporting people through that process and he absolutely loves his job anew he's actually doing very well one person said that actually things finally make sense and actually it's not my fault which is often a common cognition the depression is my fault and someone who's coming on Thursday and speak Olli and he will talk about this but he said that it was his first step in his recovery and he actually talked about this in the newspaper as well that he'd been through mental health services for years and years and in patients day afternoon patients day and he got his diagnosis when he was here in one of our units here and finally things made sense and he could then put you can then put things make sense of things and actually see his future very differently so overall our experiences at shook Center are that her diagnosis can be a really really positive experience so even someone's an adult it can still still really make a difference whether they're 18 or whether they're 70

Channel: The Retreat Clinics

Views: 175,204

Keywords: Autism Awareness Week, The Tuke Centre, Dr Victoria Hughes, Diagnosis (Literature Subject), Stress, Awareness (Quotation Subject), The Retreat (Hospital), Mental Health (Field Of Study), Mental Illness (Disease Or Medical Condition), Health (Industry), Health Care (Industry), Autism (Disease Or Medical Condition), Autistic Spectrum Disorders (Disease Or Medical Condition), Understanding (Quotation Subject), York (City/Town/Village)

Id: gyq6iP08AmY

Length: 40min 31sec (2431 seconds)

Published: Fri May 15 2015