Autism

[Guest]

Hi all. As said, I am Autistic and am also a community advisor for autistic people and their families. Happy to answer any questions 

[Florentine_Pogen]

For all sorts of reasons, this is an amazing thread.

[Guest]

Thought I'd share my story on this thread. I am Autistic. I was diagnosed at 19. I was always a bit different, but being the eldest child and then having a younger sister with a chromosomal condition we just got on with it. 

My mum enquired about their maybe being something when I was in primary four, initially thinking dyspraxia, my handwriting and coordination is still woeful, but they weren't interested. We muddled on I found a special interest in going to football and studying football history, I learned every Scottish cup winner by year from the Wee Red Book. Some kids could quote Disney films by heart I could quote "a History of Scottish football". Some people wanted to be film starts I wanted to be Bob Crampsey.

Anyway, I started to struggle at school when it came to doing Highers. The writing that was expected to do subjects like English, History and Modern Studies was too much, so again my mum and I investigated. After intransigence from school and GPs we eventually got an assessment and then diagnosis of Autism. This however took three years and meant I didn't score better than a C for my highers. I had always associated with the very high achievers and that gave me feelings of inadequacy that have never really left me. I went through an HNC in Social Care and then a BA in Social Sciences at one of the smaller universities which suited me. I tried a masters in Political research that failed miserably and was a support worker for a while. I then got the chance to study a masters in Autism at Strathclyde and led to my job today.

Combine this by being Queer (how I like to describe myself, feel free to use Gay, LGBT etc), I never fitted in, also I usually clung to one person which got me into bother a few times. I do however have a partner now and he gets it. That is the most important thing to have someone that understands you. I can hold down a full time job but only because it is in Autism and because I get to work from home.

To any autistic person or their families reading this, being Autistic is fine. There are some shite bits don't get me wrong and many people like me need to take the tourist route to get to where they want to be, but you'll get there. 

Again I am here on this thread or in PMs to happily answer questions. As mentioned earlier Scottish Autism have an Advice line open Tuesday to Friday from 10-4 for a phone or a live chat and you can email any time. 

Probably millions of grammatical errors in this. If you need it translated let me know.

[Loki]

22 hours ago, Raithie said:

My son, who is 10, was diagnosed as Autistic when he was 4 however the peadiatrician was very quick to keep mentioning the fact he was high functioning. As if that made the diagnosis better. The diagnosis didn't come as a shock and we had some suspicions, even at an early age, primarily with hand flapping and would forever line up his toys and not exactly 'play' with them conventionally. He had really bad echolalia in his early years and was obsessed with routine.

I must admit I found the whole process incredibly straight forward - referred to a peadiatrician (some assessments done), referred on to Education Psychology, OT, Health Visitor, keyworker at nursery then a round the table discussion with all in agreement of an Autism diagnosis. My wife's friend, who's son appeared to be at the lower end of the spectrum in terms of extreme behaviours, structures/routines, meltdowns etc had same assessment process as us however one professional disagreed with Autism diagnosis so he then had to go through some fast tracked assessment quite some time down the line. He ended up getting an Autism diagnosis in the end. I must admit one of the reliefs of the assessments being concluded and a decision made was we could now just enjoy him for who he is and not have to constantly assess and analyse what he was doing to feed back to all these professionals. 

In the early days it was a bit tricky - if he knew we were going to the park then that's all he would have in his head, that was the routine. If we got in the car and realised we needed petrol he would have a bit of a moment to himself as the routine was now all to pot as we were now going somewhere else before the park. My wife did an open Uni course on the subject of Autism and we've both spent countless hours researching the condition and educating ourselves on the various tips and tricks to help kids with Autism cope in life. Certain situations would make him anxious i.e. I took him to the football and it was too noisy for him so we had to leave after 10 minutes, tried again a season or two later with no joy. The lead up to going back to school after the holidays - what will my teacher be like? Where do I line up? What's the plan? what am I doing? I need to know!?, going places - right where we going? how long will be? are we going to any other places?. He also had some big sensory issues and was also advised he had hypermobility (apparently common in Autistic kids). Because of that he's never been as overly mobile as his peers and could appear quite stiff in his movements. 

However today, as a 10 year old, it's almost night and day from his earlier years. He attends a mainstream school, has minimal input from the Pupil Support Assistant, is academically at the level he should be for his age and routines can be chopped and changed with not much in the way of any issues. I think getting his diagnosis at such an early age has been a blessing as the school have then managed to put all relevant supports in place. The school he goes to is fantastic and really on the ball. He's made many friends and we can let him out and about on his own with kids in the street if he wants to. He'll sleep throughout the night (that's never been a problem) and whilst he will try a range of foods (if we push him) he would quite happily eat the same foods everyday if he could. Socially though there are some minor issues, I hear how other kids in his class converse with one another and can see a marked difference to how he would respond/communicate. He still has some ticks that he can't control such as extreme hand flapping when excited, facial grimmacing and spinning in a circle with his head tilted to the side.....but for whateve reason he appears to only do this at home. He doesn't do it at school or in public. It's almost as if he knows his house is his safe space to let out some of his bouts of energy with no judgement. We've had some family round from time to time make comments that it must be hard work bringing up an Autistic child but nothing could be farther from the truth (for us anyway). He's a piece of cake to parent and I put that down to the research and education we've done. It's now something ingrained in us when it comes to our parenting, we know the trigger signs if he's getting stressed/anxious and can put into place measures that help him. A simple "right son, you've got 5 minutes until we have to leave/go to bed/get yourself ready". He is a bit of a lazy sod at times, it's a mission to get him to shower himself or get himself ready so trying to teach him the importance of personal care and independence is something we're working on just now.

....and he's now a season ticket holder at the Rovers which is an incredibly proud father moment to see him sitting next to me, singing away and enjoying being at the football.

Sounds like a wee superstar to me.  What’s his name?

[WeAreElgin]

My oldest son was finally diagnosed in April with ASD and DCD after 4 years on the waiting list to get an appointment with the CAMHS team in the Highlands. Feel like we're catching up rapidly after having to wait for so long but that's just a sign of how disjointed the NHS can be.

It is honestly really reassuring to come to this thread and read about some of the behaviours that my wife and I have struggled with since he was born, particularly around diets and coordination. Felt like a shite parent at times being unable to understand his challenges and the diagnosis has opened up a lot of the support networks and resources that are out there. That shite is always really impersonal so coming on here and reading stories from folk I at least vaguely have something in common with is really useful.

[Florentine_Pogen]

27 minutes ago, Autistisches Nilpferd said:

 Some people wanted to be film starts I wanted to be Bob Crampsey.

 

Brilliant. Still chuckling at this.................

[RH33]

1 hour ago, Autistisches Nilpferd said:

Thought I'd share my story on this thread. I am Autistic. I was diagnosed at 19. I was always a bit different, but being the eldest child and then having a younger sister with a chromosomal condition we just got on with it. 

My mum enquired about their maybe being something when I was in primary four, initially thinking dyspraxia, my handwriting and coordination is still woeful, but they weren't interested. We muddled on I found a special interest in going to football and studying football history, I learned every Scottish cup winner by year from the Wee Red Book. Some kids could quote Disney films by heart I could quote "a History of Scottish football". Some people wanted to be film starts I wanted to be Bob Crampsey.

Anyway, I started to struggle at school when it came to doing Highers. The writing that was expected to do subjects like English, History and Modern Studies was too much, so again my mum and I investigated. After intransigence from school and GPs we eventually got an assessment and then diagnosis of Autism. This however took three years and meant I didn't score better than a C for my highers. I had always associated with the very high achievers and that gave me feelings of inadequacy that have never really left me. I went through an HNC in Social Care and then a BA in Social Sciences at one of the smaller universities which suited me. I tried a masters in Political research that failed miserably and was a support worker for a while. I then got the chance to study a masters in Autism at Strathclyde and led to my job today.

Combine this by being Queer (how I like to describe myself, feel free to use Gay, LGBT etc), I never fitted in, also I usually clung to one person which got me into bother a few times. I do however have a partner now and he gets it. That is the most important thing to have someone that understands you. I can hold down a full time job but only because it is in Autism and because I get to work from home.

To any autistic person or their families reading this, being Autistic is fine. There are some shite bits don't get me wrong and many people like me need to take the tourist route to get to where they want to be, but you'll get there. 

Again I am here on this thread or in PMs to happily answer questions. As mentioned earlier Scottish Autism have an Advice line open Tuesday to Friday from 10-4 for a phone or a live chat and you can email any time. 

Probably millions of grammatical errors in this. If you need it translated let me know.

How did you fine the post grad, were you employed at time with a related job?

My friend did it but she's a ASN teacher and I'd really like to do it.

[RH33]

1 hour ago, WeAreElgin said:

My oldest son was finally diagnosed in April with ASD and DCD after 4 years on the waiting list to get an appointment with the CAMHS team in the Highlands. Feel like we're catching up rapidly after having to wait for so long but that's just a sign of how disjointed the NHS can be.

It is honestly really reassuring to come to this thread and read about some of the behaviours that my wife and I have struggled with since he was born, particularly around diets and coordination. Felt like a shite parent at times being unable to understand his challenges and the diagnosis has opened up a lot of the support networks and resources that are out there. That shite is always really impersonal so coming on here and reading stories from folk I at least vaguely have something in common with is really useful.
 

DCD/dyspraxia is so badly understood and supported. I've spent a bloody fortune on pencils

[Guest]

30 minutes ago, RH33 said:

How did you fine the post grad, were you employed at time with a related job?

My friend did it but she's a ASN teacher and I'd really like to do it.

It's brilliant. I did it part time (full time and distance learning options are available) and worked as a support worker at the time. Staff are brilliant and there's lots of guest lecturers who come in and share their experiences.

[derrybiy]

I don't know of anyone close to me with autism so I just read this thread out of boredom and a slight interest. It's been very interesting and I've learnt a lot. I had no idea it could affect diet and things like that but it's positive to hear that in most cases there seems to be more in place to help people today.

I do remember listening to the blindboy podcast a while ago and he was explaining he'd just been diagnosed in his 30's after listeners to his podcast said it might be worth investigating. Below is a link to an article about that episode and it mentions the name of the episode if anyone is interested. I only listen to some of his podcasts as I find them hit and miss depending on what mood I'm in or what the subject is.

https://www.irishexaminer.com/lifestyle/artsandculture/arid-40850642.html

[Gaz]

I only just saw that I was tagged in this.

I have three daughters, my oldest two have autism. Our youngest is 2 but is showing the same kind of signs that our oldest two showed, and now we recognise them it's likely all three will have some form of ASD.

My wife is also autistic and has ADHD. It is likely that I am too and I am currently undergoing testing at the age of 39.

Early intervention is key. For our oldest daughter our local authority refused to allocate her a space in specialist provision, despite her attending the specialist nursery at the same school. We had to take them to a tribunal, lost that, but eventually she was allocated a space and is thriving. She is very unlikely to be fully independent as an adult and academically she is very delayed compared to peers at the same age, but she absolutely adores school and learning about things she is interested in. It's difficult though as she isn't fully toilet trained and when we're out we have to be careful about what we do in case we need to change her. Thankfully more places are getting Changing Places toilets with the full-size changing table so we don't have to lie her down on bathroom floors.

Our middle has a diagnosis of Pathological Demand Avoidance (PDA) and it's also likely she has ADHD but we are waiting to have her assessed through CAHMS. Unlike her older sister she was given a space immediately in our local specialist provision, but had a miserable primary one. She now attends an out-of-authority specialist school. Academically she is a sponge and soaks up everything she learns about. She is incredibly clever. She is also almost fully toilet trained but sometimes has accidents and so usually has to wear pullups just in case.

Our entire lives are governed by routine. We more or less do the same things every day and eat the same kinds of foods, go to the same kinds of places. It is incredibly challenging and draining on me and my wife's mental health.

My wife is the smartest person I have ever met and has three Master's degrees in various forms of childhood education / autism specialisation and is currently doing her PhD.

I'm happy to answer any questions anyone has about being a parent to children with autism.

[mathematics]

I studied mathematics at university in the 90s. Felt that there was a load of simply really weird folk in my year. Couldn’t look you in the eye, couldn’t hold a conversation, plenty had hygiene issues too.

After moving into education, and learning about the multiple various quirks and traits associated with autism, Asperger’s, ADHD, dyspraxia etc etc, I realised that plenty of my fellow students back then simply had one or more of these conditions.

This thread, simply for educating people, is fantastic. The more we know about these conditions, the more we can live with, cater to, work with, and support those living with them (first and second hand).

One key point is the variety in conditions. Autism certainly isn’t a one-size-fits-all. 

Edited August 13, 2022 by mathematics

[Gaz]

One thing that I would say, and I've always been honest about it, is that within the autism community you will get self-martyring parents who will claim that everything is rosy when you have children with autism.

It is not. You will have days, weeks, even longer that are absolutely horrific.

My daughters thrive on the routine of going to school. Every year we have seven weeks of hell. I go back to work next week feeling even more exhausted, drained and worn down than I was when we finished up for the summer. I genuinely feel like I get no break from anything.

[effeffsee_the2nd]

there was a neurodiversity thread a wee while back, 

i don't have autism but one of the other conditions that have been mentioned. all i'm going to say is, apart from talking to strangers on a football forum, i live a completely normal life. relationships of all kinds certainly are difficult but my condition isn't the whole story,  

eye contact, theres a thing.  for me, holding eye contact with someone who is talking to me feels exactly the same, in terms of internal discomfort and awkwardness as staring at a stranger across the room would. i know that you are supposed to do the former but never the latter, they both feel the same,  does that help explain it?

[Boo Khaki]

I can't look a portrait style photos of people I know. Freaks me out completely. Strangers I have no such problems with for some reason, possibly because my brain doesn't see a 'person' staring back, only another human being, but if it's a friend or relative I can't even look at them for a split second.

With people in person I don't usually make eye contact at first if the interaction is a conversational one, but if it's just an 'awrite?' across the street or the bar I can as long as it's only for a fleeting second. Once the convo is underway I tend to only make eye-contact at the end of a statement or when I'm asking a question, but my girlfriend says that for the bulk of the time I narrate or monologue staring off into the distance, and the only sign I give that I am actually holding a two way conversation is that I do make the usual gestures and facial expressions that go with that, only I make them to nobody in particular rather than facing the person I'm talking to. She also says that when she comes to mine she's sometimes here for half an hour or more before I make eye contact with her for the first time. I'm not even aware of it because I'm not consciously avoiding doing it, but since she's mentioned it I have realised it's true enough.

[Venti]

Think it's amazing there's so much help on this forum.

[cb_diamond]

A fantastic thread.

Not sure where you are geographically @Crazy Days but probably worth pointing out that there will be differences from authority to authority in terms of how they work their school provision. For example in North Lan there are strictly ASN schools for varying different reasons (social-emotional/complex needs etc). These run as their own entities and will have specific focuses along with their learning. For example, fairly local to me are places like Buchanan High which caters directly for people who are on the spectrum. There are other specialist facilities though that are housed within mainstream schools called LCSC (Language and Communication Support Centres). With these the expectation is that the young people will attend mainstream classes and work towards formal qualifications in school with support the majority of the time. They will also spend time within the LCSC in both specialist class groups and also to allow them space from the hustle and bustle of a busy school.

It would be worth finding out the picture local to you so you're well informed. Best of luck with everything. 

Edited August 14, 2022 by cb_diamond

[Crazy Days]

4 hours ago, cb_diamond said:

A fantastic thread.

Not sure where you are geographically @Crazy Days but probably worth pointing out that there will be differences from authority to authority in terms of how they work their school provision. For example in North Lan there are strictly ASN schools for varying different reasons (social-emotional/complex needs etc). These run as their own entities and will have specific focuses along with their learning. For example, fairly local to me are places like Buchanan High which caters directly for people who are on the spectrum. There are other specialist facilities though that are housed within mainstream schools called LCSC (Language and Communication Support Centres). With these the expectation is that the young people will attend mainstream classes and work towards formal qualifications in school with support the majority of the time. They will also spend time within the LCSC in both specialist class groups and also to allow them space from the hustle and bustle of a busy school.

It would be worth finding out the picture local to you so you're well informed. Best of luck with everything. 

thanks

[effeffsee_the2nd]

genuine question here, what is the likely affect of attending an ASN school on a young persons employment prospects? Assuming that a job is within their capability is it likely to swing the balance either way? i know in theory discrimination would be illegal but in the real world these things are often hard to prove

[RH33]

1 minute ago, effeffsee_the2nd said:

genuine question here, what is the likely affect of attending an ASN school on a young persons employment prospects? Assuming that a job is within their capability is it likely to swing the balance either way? i know in theory discrimination would be illegal but in the real world these things are often hard to prove

From what I know from a friend who works in ASN, they have people who work with senior pupils to ensure positive destinations. Her school work with very complex needs so academical outcomes very different, but they offer practical and life skill classes too. 

Getting a place in a solely ASN school is very hard, hers had five kids for every P1 kid this year.

Suppose with everything it'll come down to the open mindedness of employee. My younger cousin is autistic (sole ASN not option where we lived) and did a panel beating/car body work apprenticeship. He spent three years working for McLaren super cars.