Paul Isaacs 240521

Hello, this is Anna Kennedy, aren't we talking all things autism on women's radio station, the station that is for mental health and well-being. So been busy be as per usual and obviously we've had the easing of lockdown and I actually went into the town and I thought it was going to be a lot busier but no, I think people still taking it cautiously and yeah, it's a good feeling that we're on our way out of the lockdown but keeping our fingers crossed obviously and just taking it a day at a time. Before I go over to my guest Paul Isaacs who's also one of my ambassadors and autism consultant, I just wanted to go over with you three books that I feel that I'd like to chat about today. So one of them is called Mickeypedia, the A to Z of an autistic savant and Mickey Mayhew is an inspiring autistic role model and he is also a supporter of the charity. So Mickey was autistic long before it became acceptable having autism in the 70s and 80s was a remarkably different prospect to growing up amidst today's neuro device tribes. Aged just 12 he was permanently excluded from school, some 30 odd years later he now works as a researcher highlighting the plight of a group still often marginalised and misunderstood by the mainstream. Along the way he picked up five degrees, several book publishing deals and a handful of accolades from the burgeoning autistic community. All of this took place against the backdrop of the lurid 80s London where he encountered some of the best and the worst, the city's unsanitized pre-politically correct underbelly had to offer. His book is available on Amazon so just to remind you it's called Mickeypedia and all of the proceeds kindly are being donated to Anna Kennedy online so thank you so much Mickey and thank you for supporting the charity. The second book again proceeds going to our charity is from one of our charity champions Dawn Avery and her lovely family so that's from Atiyah Tahir so you can actually purchase the book from the charity website so if you check out www.anna kennedy online so just to remind you it's called from Atiyah Tahir and it's autism a family's journey and it was written originally as a form of therapy. Dawn actually started writing this book when Aston was six years old and he's going to be 30 very soon so during lockdown she decided she wanted to finish the book and she has and it's got a lovely photograph of Aston on the front cover and as you know Aston is also one of my ambassadors and we once a month speak on Gateway radio talking all things autism in Essex. The last book that I would like to just to remind you about and also a women's radio speaker is that Clea is the name of the book effective communication in a neurodiverse world autism inspired tips for allistic non-autistic people written by Zane Gaynor, Catherine Alveos and Joe Butler and everyone will know an autistic person making this an essential read for all short Clea chapters that's what I like about this book easy to follow tips again another asset to this book and promotes positive change so again if you're interested if you check out www.sendsupport.co.uk just to remind you www.sendsupport.co.uk I also want to remind you about the Autism Hero Awards we have a few judges that have said they would love to be one of our judges and I'm so glad that I don't have to judge we have been inundated with nominations because we still have the nominations from last year because obviously we had to postpone the event so this year the closing date will be the first week in September so some of the judges are David Grant MBE husband to Carrie Grant he's so excited to be reading the nominations Kelly Barker from Born Anxious is also another of our judges and Dr. Pam Spahr another supporter of the charity and we have a few more in the pipeline at the moment and just waiting confirmation if you are a company and you might be interested in supporting one of the categories or sponsoring one of the categories please check out the charity website just to remind you again www.annaKennedyonline.com look under the events and it's the Autism Hero Awards so first week of September the nominations close and the event itself takes place at the Chelsea Harbour Hotel in November we're keeping our fingers crossed that we've got three events within 12 weeks so in September we've booked St. Ives Autism's Got Talent the Roadshow excited to be going there in October we'll be celebrating Autism's Got Talent 10 years I can't believe it 10 years at the Mermaid Theatre again check out the information on the charity website and then the Autism Hero Awards will be happening in November so that's really exciting stuff and again please check out the charity website on the events page for our workshops and Paul is one of our ambassadors and also one of our workshop speakers and we have lots of other workshops in the pipeline and please check it out and book your free slot so today my guest is Paul Isaacs an ambassador and a consultant for the charity and volunteers 18 hours a week and we really appreciate the work that Paul is doing for us he's an autistic trainer speaker consultant and blogger he has co-authored several books including life through a kaleidoscope and living through the haze Paul has released and published five books on the subject of autism published by chipmunker publishing and has contributed to other books too he's have sorry having overcome many challenges to achieve the success that he now enjoys Paul message is that autism is a complex mix of ability and disability he firmly believes that every autistic person should have the opportunity to reach their potential and be regarded as a value member of society welcome Paul and thank you for joining me today thank you for having me oh thank you Paul how long have I known you now i was trying to figure out when i first met you um i believe you saw me in Milton Keynes and it must have been in 2000 and oh 15 16 what was that yes yeah it was the puzzle center that's right i remember because i'm one of the puzzle center ambassadors so um yes that was that's right you're right you're right i remember that event um and it was um quite a nice place i believe that that we went to um trying to remember the name of the building but i can't but never mind so um thank you again for joining me and thank you for being one of our consultants and one of our ambassadors really appreciate your support um so if someone's listening in and they think that their son or their daughter might be on the autistic spectrum or themselves how would you describe in your own words what autism is oh good yeah big question um what is an as you know from my my speech is in my workshops and my ethos is is a complex mixture of different things and the analogy i use is the late daughter williams fruit salad analogy which she created in around 1995 so once someone gets started knows with autism you don't necessarily a know what it is and b know what it is specifically for you so with her analogy it gives you an opportunity to know the different mechanics of what your autism fruit salad is so rather than looking it as a singular thing autism maybe we should start looking at it in a in a more plural less singular sense autism's it's it's three-dimensional it's it's non-linear it's not a straight line so what autism is for me is different like someone else for example your son angela and that's a very important distinction because you have because the mechanics are going to be different the the the way uh the person has different information processing challenges and different mental health conditions which we're going to be talking about later the way they see themselves their identity environmental factors learning styles etc human beings are patchwork quilts in a sense they're made up of different things and if you just add autism into the mix it's still relevant of course but everyone is made up of these different pieces so my my advice to to people is to get the correct information and not only get the correct information but it's the way you use the information so i was fortunate enough to know donna and speak to her and garner her her wisdom so that meant that i was able to have a reasonable amount of information put to me in a rather quick uh amount of time from knowing her so when people get diagnosed just around that that question of it's about actually not only taking the information but internalizing it so the way in which you internalize so for example the fact that i'm face blind that is given an explanation or the fact that i have a language processing disorder that's that's given explanation to those experiences or the fact that i don't see things in coherence and have object blindness and meaning blindness the fact that i had such a severe language processing disorder when i was younger that i used to dissociate as a way of getting out of that situation so it was a trauma-based response so once you start actually piecing these these things together you begin to understand parts of yourself so my hope is is in years to come is that when someone gets a diagnosis of autism even if the word is going to be used or not we don't know in the next 50 years um so if someone gets a diagnosis what i would like to see is that people are told the different pieces that they have so it's not just a singular diagnosis you're actually giving a detailed uh personalized specific um diagnosis which not only helps the person in question but the people around and family members friends etc okay so how old were you when you were first diagnosed with autism i i was diagnosed because i'm 35 yeah so diagnosed in in 2010 at the age of of 24 okay so um how can i if you don't mind me asking and obviously i've spoken to you many times but for people who are listening in how was your school years for you and what difficulties did you have well yeah the the difficulties it came almost immediately um at that point the the observations um from my parents even before education started was was initially at six months old my mother thought i was deaf and blind um there there were things she was noticing um which were were difficult uh for her to um fully understand but she had empathy so even though she didn't fully understand where intrinsically all these things were coming from she had empathy and compassion as my father did to actually um just accept me um as their son but when i got into education it was it was clear that there those challenges were going to be met with different viewpoints so initially when i was in preschool the the head mistress therefore i was attachment sorted and then when i got into year one um one of the teachers said to a parent you know i don't know what to do with paul in terms of how how how difficult it was from her perspective to actually get me to internalize information um so through primary school it was it was very difficult in that sense um i'm surprised you should ask you to um ask your mom to visit the gp for a diagnosis of um whatever at that time she may have thought that you had yeah i mean there were a lot of things that were said other other than that i mean i i went to an clinical depression because at that that final year between 96 and 97 i was being bullied by a teacher which obviously just meant that my mental health receded quite quickly and when i went through cams cams uh at that point was was very different to what it is now it's that many big 90s they they weren't askew in giving labels and i found this out from the man who died knows me that that's right um you talk about clinical depression what are the signs to look out for would you say um for people listening well i could only talk for a personal yeah um when i was a child um in late infancy um one of the the the the factors which um my parents noticed is that i was um i stopped eating so my lack of interest in food i was sleeping far more than usual um and i believe i was having some sort of um breakdown i was i remember uh having a bath one morning i think it was at the weekend and somehow i convinced myself that if i got into the bath um that i would sort of dissolve or melt it was sort of an irrational delusion and i ran upstairs and hid in my in in my bed that's one memory that springs so in that when we did go to the GP those concerns had already been being seen and observed by my parents uh so the GP recommended i went to cams and through cams the problem with the assessment is that they went down the attachment disorder route again so they observed that i had difficulties in processing they observed that i had potential learning difficulties etc but there was nothing conclusive in fact one of the worrying aspects of the the assessment is that they wanted to keep an eye on parents so that got wrong very quickly because if the uh assessment had been done again or revised maybe maybe something more sinister could have happened but yes that was the conclusion of the of the assessor um and i was uh recommended to go back the following year which i declined when i started secondary school so for me from a personal perspective in terms of what depression looked like for me as an infant was withdrawal um lack of eating so not wanting to eat losing weight um and fatigue okay so once they diagnosed you with clinical depression if you don't mind me asking what happened after that for you and not not much really uh they recommended that i go to group sessions with with with children of a similar age and i used to go there every Thursday there was no feedback for my parents so my mum used to go and wait for about an hour when i used to do this group therapy and nothing was said so and now those are my mum's words and nothing was said nothing was fed back and and nothing was actually concluded so nothing really had got a fair so basically my mother was doing what they told her to do which was to take me to uh these therapy sessions but i didn't fully understand what was going on i went to them i enjoyed parts of them but i didn't get the significance of what they were doing and nor did my parents so obviously if they didn't really do much and and didn't really speak to your mum about any feedback whatsoever so how did you get yourself out of the depression what did you do um i didn't go out get out of the depression it continued okay uh which was i'm sorry to say because when i started secondary school um in September of that year September 97 i was bullied in the first two weeks and that continued until the end of my tenure there so it's basically just going through day to day in misery i'm afraid to say but that is that became normal for me so that it there was almost a normalization this is what it is um this is how i'm being treated etc so when did there was no support for my parents may i may i add either okay a few very lackluster meetings with heads of year um but that again there was no um real conclusive support so when did things improve for you at what age at what age yeah i would say around 2015 so not that long ago you know it's not that long ago at all um because before 2015 uh the problems continued so what happened is is a filtering from education and then i went into employment and then our difficulty is for employment uh from uh 2002 well yeah up until 2015 so uh so what was it because of the diagnosis is that what started the improvement for you was that like the first step of making that that is actually a very good point the the diagnosis um and the self-reflection and to be objective and to get a sense of autonomy was the beginning of uh self-acceptance and actually all the negative experiences are i've just uh covered let go of them and one of the ways in which i was able to let go of them is that they didn't know so the people who misunderstood me or bullied me whatever their reasons being they didn't they didn't know that i had autism they didn't have a framework to understand uh me and nor did i then so what i'm trying to say there in that in that very sentence is that um letting go of things is about forgiveness because people who are unhappy sometimes go down the route of projection uh and that means that they may start assaulting verbally physically or otherwise other people because they're hurting um so i'm not by any means advocating that sort of behavior but i am at least saying that one has to try and understand so part of the journey of of self-acceptance is to accept what happened in the past and and get a different lens of what was going on if the lens what was going on is that that information wasn't privy to anyone at that point in time about my diagnosis and even if it was considering the environment i was in it probably wouldn't have made much difference okay did you um heard of autism before your diagnosis did you know what it was i it's interesting you say that because so i going at it's secondary school during the lunch breaks i was going to the autism base okay yeah i used to have lunch there and i used to converse with these uh these people that other students a lot of them stayed away from uh either because of fear or not fully understanding probably a mixture of both but i actually got on with many of them okay now many years later someone told me um someone who remembered me from from school yeah actually said that um they they suspected i had autism there and then oh wow and that was quite upsetting to hear because and i asked i said well why didn't anybody say anything and it was policy and do you know how topsy-turvy the policy was if a mainstream teacher had suspected i had autism then they would have would have gone through a procedure but because it was staff at the autism base that suspected it there was a red tape which meant that they couldn't follow through with anything now how bizarre is that big time bizarre you would have thought i just can't even get my head around that well i couldn't when i heard it i thought well what sort of logic is but that's the truth and that was many years ago it was it was a music therapist who told me this um i was doing a speech i think in london and we were just chatting away and i said a bit about my my my life at the secondary school i resided and he he he obviously um knew of me for for for him to say that yeah so i found it very interesting from a you know just a policy point of view that uh change that policy now oh i hope so yes i really do i i know when i do the speech in the local area there was a lady in the audience who was from lord williams who was who was quite taken aback um from my uh experience at their school um the thing is it's not necessarily reflective of the school in its totality it's it it could be just a reflection of the school not having the knowledge if that makes any sense um it wasn't necessarily necessarily the school as a whole yeah it's my experience of the school because certain things weren't necessarily put in place but i wouldn't have had them any differently because if i wasn't going to get anything educationally out of school um i was going to get um an understanding of people yeah that's what i got out of school okay thank you for every negative there is a there is a positive there is something to be taken out of a situation however dire it seems to be at the time yeah uh so that's how i i've got my head around by my educational years um my my early years in employment okay so when people first meet you paul um you and obviously they noticed that you wear tinted lenses is there a reason for the tinted lenses yes i i i acquired them in 2012 lenses for me again it's my personal um having them help me with uh face blindness help me with with context blindness they help me um with a condition called object blindness which i talk about so basically when i put the put the lenses on my visual world is glued together so i can see things as holes uh before that i just saw things in bits and for every bit i would see it would neglect everything else so i could focus on uh the room not the people or focus on the people not the room if i focus body on a person it'd be focusing on pieces of the body so focusing on the eyes or nose and then losing everything else like focusing on the hair lose the face focus on the face lose the hair that kind of thing and where would you get them from well i got mine um from uh a company called erlin but there are other companies that um supply uh tinted lenses and there's actually a gentleman who i'm um connected with called ian jordan who is a specialist in in visual perceptual conditions not just in autism uh other conditions it can overlap with as well and i i was thankful enough to meet him um before for lockdown uh just took over the whole world didn't it with covid and it was really interesting talking to him and another lady called stella waterhouse now stella isn't uh um doesn't do the the tests for tips but she has a vast array of knowledge of autism and visual perceptual conditions as well yes um so at that point in time in 2012 i got them from a gentleman called james billet because we co-authored a book which you spoke about at the start of the interview called life for a kaleidoscope which was co-authored by him he's currently retired now okay but it's the gentleman who supplied me with the lenses okay yes you carry on sorry it's just we've got quite a bit to get through um um that i'd like to chat to you about and just actually because we've touched on that book if people are interested in purchasing it where can they get it from you can either get from the chip munker website yeah or amazon.co.uk i have um i have a books page so if you type in on amazon paul isaac's autism there's a page with all my books okay um we touched on lockdown can i just ask you briefly how was lockdown impacted on on your life and on your work um obviously work's changed dramatically because i don't see people in the flesh i'm seeing them through computer or iphone screens but that hasn't bothered me too much um my mental health has did a road and you have to try and do something about it so what i've been trying to do is um walk around the village once or twice a day fresh air and for movement and uh i'm currently at an austere path um which is doing great work for me because i had a lot of problems with my neck my shoulder um my lower back um it's amazing really when you you you suffer with these things i don't realize um he realigned my pelvis which was amazing i've been walking around with a misaligned pelvis and what i realized soon after that adjustment is when my feet hit the floor and i started walking i was walking flush before that i wasn't walking flush at all because there was an incongruity in the pelvis that has not only helped with my physical health but that has helped with my mental health as well because as you know if you're in pain all the time it is going to get you down um it because of all the chemicals and toxins building up and then the neurotransmitters in your brain start um lessening in dopamine and serotonin which is all to do with mood regulation and part of the emotional regulation too so osteopathy for me has been um a very cathartic experience and also walking i'm lucky to live in a village that's very idyllic and very picturesque so on a sunny day it can be quite beautiful walking around my local village um another thing i've been doing is keeping in contact with friends over zoom every two weeks um and these are friends i used to meet up in oxford every two weeks for our restaurant meetup so i've been keeping in connection with people um what else have i been doing buying films not too many um occasionally drawing and doing art and occasionally doing writing as well so that's how i've i've been uh managing lockdown what kind of art have you been doing out of interest oh i do abstract art so um over i suppose the past year on and off uh there's a lady called sharon king who um has three children on the autism spectrum well at one they're adults now technically um and she is a writer uh she wrote a book about her family how how best to help an autism mum which is on alison as we plug in books uh it's a really good book and i think you as another um anna would would certainly relate to that book um it's a really interesting read and she writes abstract um very unusual but equally very creative short stories um horror is uh oh yeah genre and so because i've got a similar mind to her rightly or wrongly um i i've contributed to to um giving her books life through um my art and that's been a very interesting project i've enjoyed that yeah i met sharon at um the work for autism because she was chosen um she was nominated and chosen to uh have a makeover and walk down the catwalk and obviously i've met rosie as well um who is another an amazing young woman so um you are a public speaker and a very good one when did you start public speaking and what was your can you remember the very first time you um gave a speech yes uh the first person i i saw on the spectrum talk was donna williams in 2009 at headings and girls school which is near oxford and i was working at an autism base at the time and i was fascinated although a little bit confused by this little australian lady who had a lot to say it was quite a very impactful um speech and i also observed their artwork and i can always remember going up to donna and say and i asked her what is your artwork made of and i explained about myself and my father and she said you're sensitive and so is your father she was one of the most perceptive people i've ever met and it was very very interesting speech again i i think i'd point out between that that i was working at an autism base if i hadn't already around that time doing volunteer work and there was a flyer on the one of the cupboard doors about um advertising young people to speak and that is how it started so the following year in 2010 i was headed to girls school where i saw donna and i did a 10 minute speech about my life on the spectrum to around 200 people that that was my first memory of um how did you feel after it oh um oh that's an interesting question i don't know really um a bit a bit tired yeah um and i got a paycheck at the end um i think it hit me and it hit me maybe a day or two later yeah um and i felt quite emotional but equally quite proud that i had you know basically got up in front of 200 strangers and um said about my life very briefly i mean how brief can you get 10 minutes but then it's only went from 10 minutes to 20 minutes to 45 minutes to doing you know a standard hour and a half or um i remember one uh one day at school it was three hours um i can go up to three hours and and actually talk you must be after that yeah i was almost asleep on the train back uh yeah i needed a coffee after that one yeah and also my subjects of of broadened as you know yeah and and also not i i continue to do research when i can so i'm constantly expanding my knowledge and it's not necessarily knowledge about myself i think i've done myself in so much i've got almost two i'm almost too self aware of myself um in terms or in terms of um what all the nooks and crannies and all the bits of that myself i the autism fruit salad analogy i used on myself first yes to try it out and it worked but now currently i really look to other people to learn from who are different from me who have different fruit salads who have different experiences and in fact i'll go as far to say i've learned just as much if not more from them than wholly myself so people want to um book you for a talk or want to follow you on social media could you share um with everybody what uh where to find you yes i mean if you want to find me on on on a website just google poor lies x autism they'll obviously find um links to to to your website but my website is google sites so if you put in poor lies it's google or poor lies it's google sites you'll find my main website um twitter is poor lies x 22 um i'm on youtube as well so poor lies x autism youtube channel um and you're getting me to think now i've got a facebook page there's so many yeah i've got facebook page um poor lies it's autism advocate uh a facebook page and then i've got book pages for all my books but the main one is is really um the the poor lies it's facebook page and if you want to book me you can either go through the page the website or email me directly which is staypuffed12 at yahoo.co.uk if you can't find a pen everyone you can always contact us at the charity website so yeah can i talk to you about and we we have chatted about this before you and i but what do needs to change in the world of autism advocacy how long have you got exactly yes i've got questions to get through so yeah yeah i would say from from my observation of of doing this for over 10 years i think we need to just get a much more uh balanced narrative on autism i've been seeing a lot of militancy on on twitter and facebook a lot of aggression a lot of uh bullying if i'm going to be quite frank in different groups different groups that are created and it creates a lot of um animosity separatism divisions etc parents may feel scared that they're saying the wrong things yes definitely uh different terminology changes it seems every day what is acceptable one day is not acceptable the next um you get some advocates uh are not balanced at all and they seem to talk as autism as a collective thing as if they're talking about everybody through their own experiences which is highly inaccurate so i'm not a curious and i'm not a culturalist so i'm something in between um and people have a problem be it their own internal reasonings or whatever um we've been seeing someone who's neutral i'm not a sellout but people probably think i am because oh he's not doing it for the cause well you've got to start thinking what that cause is if that cause is berating parents or berating people who um have a different idea to you then maybe you need to start thinking about what the cause is so if you strip away all the militancy and all the politics and all the the venom and toxicity that is where you can start changing and making meaningful change there is no such thing as pure autism there is no such thing as one person with autism speaking for all what you should be able to do is have a platform a group a page whatever where somebody or or bodies more people the better can actually talk about their multiple experiences of autism in a balanced refined way so for example your son Angelo probably his profile probably doesn't get enough recognition in the autism community i would see more of that i would more of that where people like your son Angelo who have a similar profile to him are actually given a platform to be discussed not in a derogatory way not in um you know a demeaning way just a balanced um objective and autonomous way and just to point out to the listeners i've met Angelo on more than one occasion i can assure you he's a very bright intelligent and constant man um and despite his information processing challenges which are clear he is still those things and i that's where i think um we need to we need to change we need to stop all the toxicity um and actually start thinking about autism in a more broader three-dimensional and inclusive way you cannot preach inclusivity if you're not inclusive yourself definitely really wants me up about some advocates they talk about inclusivity uh wanting to be a part of the world uh wanting to be a part of things yet in the next breath they're actually you know making someone's life a misery and those two things in in my mind at least are completely contradictory and for the outside world looking in if this if you're you know an employer this is my only my opinion if you're an employer and you're looking to employ people on the spectrum or autistic people that's another thing people are worried about saying people on the spectrum autistic people exactly and parents and individuals are worried about saying but if if they see this toxicity on twitter or whatever you may be using at the time for me they'll have second thoughts about thinking do i really want this person as an employee of mine so i think you're doing yourself not an injustice and when when do you think it all started changing and why i think it started changing when people started cherry cherry picking what they thought autism was and wasn't uh when you start and that's to do innocently enough with a lack of knowledge but there's there's a massive difference isn't there between feeling you're right and knowing you're right feeling right is is up for debate but knowing you're right so you won't once you get the facts about autism and this is why as you know i use donna williams fruit salad analogy is because it's the perfect foundation for self-development you can understand yourself or you can understand your child it gives you a platform to understand the different pieces that are going on within a person's autism but what i find with some of these advocates they start saying things well all autistic people do this or they they have this blanket approach which i think is very dangerous and it it means that people in the end are excluded because the process is going to look at that and say well i don't do that in that particular way but i'm still on spectrum or i'm still autistic whatever terminology you you choose to define yourself as and another thing going on about identity and terminology one uh as myself i say a person with autism but there's a massive massive who are now about saying that you have to say identity first don't you that autism is everything about me yeah it isn't and i say that not in a place of anger but in a place of balance it's impossible for your whole being to be about autism because everybody is made up of different things autism happens to be riding along with one's personhood but autism isn't my personhood there are other things going on i do use both and i i i i see exactly what you mean um i i say autistic sometimes and i say person with interchangeably but probably one more than more than the latter but i think when it becomes political when you start saying um that a person everything about that person is one thing uh we've got to take a step back haven't we and think are human beings just made up of one thing i would hope that someone comes to conclusion no we're made up of so many different things i'm saying we as in human beings yeah um and i worry that some um generalist very blanket statements are being used as um not you know rhetoric for autism in the sense that these very uh blanket generalist terms or views are being seen as autism when actually autism doesn't have a look it doesn't have a look at all because if it did it would be far easier to diagnose definitely doesn't have a look and because it doesn't have a look if someone like donna comes along and says hang on a minute it doesn't have a look um some people are bound to be threatened um because someone's coming along and tearing up the the the rule book yeah we've we've got to come to a point now surely in 2021 that you that a you can't define someone by just one thing and b when someone is diagnosed with autism they're quite clearly not all going to act think and be the same um so what do you want to see for the future what would you like to see for the future so if i said to you paul here's a magic wand what do you want to see for the future for understanding autism for the benefit of the whole of the autumn community um a platform for yeah i'd say i'm like a broken record a platform for for people to understand autism as a three-dimensional uh multi-layered condition within conditions it's it's a mixture of conditions in um based in urology and or biology so some people with autism are face blind some people that with autism are object blind some people with autism are meaning blind some people with autism are literal some people are some people with autism are dyspraxic some people are some people with autism struggle with self and other other and self and getting that shared sense of social some people with autism have metabolic conditions some don't some people with autism have elastanol syndrome and hypermobility and collagen disorders some don't some people with autism have seizure disorders and that has a 70 prevalence some don't some people with autism have personality disorders and that has 70 crossover some statistics say 50 some don't so when i put it to you like that that's where we've got to head we've got to get as much information personal practical whatever and build up a framework so when someone actually goes for a diagnosis in 50 years or 100 years time they have all these pieces at their disposal and what that means is is that when you talk about someone's experience or have to observe someone's experience um then you can start building those pieces together and then when you start building those pieces together you can start creating strategies meaningful strategies strategies which mean you're working parallel with the person's system um and what that means is is that you're actually working with their system your their nervous system is going to be calmer and and you're going to get the best out of them so that's what you think people have missed them do you think people have uh what was it i'm trying to say that have been missed because of all of these overlapping conditions and been diagnosed not with autism but with other conditions yeah absolutely i mean i was diagnosed with schizotypal and borderline personality disorder psychosis uh and auditory hallucinations in the late 2000s wow sorry not yeah the late 2000s that's correct so i was in my teens early 20s and that's what i was diagnosed with autism because autism comes with other things and that is that's so that's where that's what i mean when i say there isn't pure autism um firstly because in itself there isn't but actually because other things coincide with it that's where i would like advocacy to go where we we dare to be open-minded we dare to be inventive we dare to be fearless in saying who we really are and i mean people again in general you can but you can although i'm i'm saying this in the context of autism you could actually broaden that out into to any part of society so we've got i've got a couple of more questions and we haven't got very long so um what is it what is it like for you for being functionally non-verbal just very briefly well if you can imagine um uh uh you know and this was a kind of dual this was a kind of a double whammy to processing um if you can imagine you know even if there were words in my head i would lose them um and that would be very um almost transient and ethereal in terms of an experience and when i heard people they they were fragmented and phonically they they sound the sounds that came out were meaningless so what happened was was that i had to use other things to gain a linchpin from my emotions and not only that if words did come out i didn't necessarily have um because of the speech organs um the the ability to actually form the words physically so there were two issues going on there was oral apraxia which was the apraxis of of the mouth the tongue the jaw it's not just the the the lips it's it's the speech organs is is a multi-faceted thing so you're thinking about the muscles the jaw the tongue the lips the mouth and then the other aspect was um not having fun not having words meaningful words in my head so the inability to mentalize words that went along with visual perceptual challenges so if you think about it if i couldn't see things coherently um so i was a mean in death being in blind child i couldn't marry pictures pictorial association with words so it's the inability to mentalize language which meant that i created a language of my own so i was yeah exactly very much like angela and that those are the people i relate to in terms of development now what what i will say is this is that he has continued to develop he's gone down a different path to mine not less um and he and what what meant what was retained through having uh not having functional speech was the ability to merge so it's the system of sensing which i've spoken about which is if there are a higher level of information processing blockages that means um i've i've just it's freeing up the ability to merge with people merge with people's energy merge with people's emotions because the information processing blockages are deeper so what that potentially means is you've got a more sensing potentially more emotionally introspective person in my experience so through being a an observer of the world for that period of time to mid to late infancy meant that i appreciated language um i appreciated my world but i equally appreciated the interpretive world as i grow grew to understand it but as as donna william said it was understood but as a second language so you talk about donna williams um so if people are interested in buying some of donna's books where where would they find them jessica kigsley publishers because they're the publishers who predominantly i think published all their books and obviously amazon if you want to get softback or hardback um go to amazon thank you so if people are interested in finding out a little bit more again about paul or purchasing his books if you um didn't quite catch all of the various different links you can always message us on the charity website which is www.anna kennedy online.com and also our workshops that paul gives on a regular basis to the charity again on the charity website under events and workshops so i would definitely recommend that you listen to paul and they are free workshops so you need to book on zoom so then the link will be sent to you via an email and you can join us for 45 minutes to an hour so if we've come to the end already always a pleasure to talk to you paul and thank you again so much for supporting the charity and for being one of our consultants and for being one of my ambassadors and role models always a pleasure to talk to you you're so level-headed and um i wish a lot more people like you paul so i just want to say thank you again um for joining me oh you're welcome it's been nice talking to you oh thank you paul so um i wish you all the best and keep walking and enjoying your idyllic uh village where you live yeah thank you and thank you everyone for listening and keep well keep going one day at a time hopefully we're very near the end now um of this nightmare that we've had in the past year um so yes thank you keep well and keep going one day at a time we'll get there all the best everyone keep safe