Well, I Guess I've Got It Then

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I’m new here so, I thought I’d share some of my own experiences. As a toddler, as far as I know, I had no delay in speech but I did have some communication issues. I was verbal but was unable to fully understand and follow most dialogue. All the words were in my vocabulary but I had trouble understanding complete sentences.

My ASD was compounded by ADHD. School was very, very hard for me. I remember my first day in the first grade. My Mom dropped me off and I screamed the ENTIRE day, even through recess. My poor first grade teacher didn’t know what to do with me. She was only a young girl perhaps in her twenties. So, she told me to go stand at the base of a utility pole on the playground and stay there. I still recall standing by the telephone pole screaming and sobbing uncontrollably.

I also had a hard time following the teacher’s instructions and would drift off into my own little world and often completely tuned out what she was saying. By the time I was in the second grade my parents sent me to a different school because (I think) the first school wouldn’t take me back – I was just too disruptive.

In the evening at home when I was supposed to be working on my homework, I would run back and forth from wall to wall in my room making noises and thinking I was doing something exciting somewhere else. When I would “think” like that, I could actually “see” the things I was thinking about if that makes any sense at all.

Because of these (and more) bizarre behaviors, my parents had me see several different psychiatrists or psychologists over the years. But I don’t think they knew it was autism. I simply cannot fathom how they missed it. It could be that they caught it and either my parents could simply not accept such a diagnosis or refused to tell me.

When I was nearly grown my Mom told me that I had hurt her very badly when I was a small child. She’d come to my bed and try to comfort me if I didn’t feel well or something and I’d push her away. "Go away. Leeme alone! Don’t touch me!" You’d think that’d be a red flag.

My Mom always told me that I was "different" and "special" and that I needed to accept that. So I did. But I never knew WHY I was "different".

When I was in college, my music therapy professor had a class on autism one day. (Remember, I’m talking 1970s here). She said that she’d once had some autistic patients that were fascinated by things turning around. She said one kid would sit and watch a record player turning and become absorbed in that. I understood her to say that this was a common trait among patients with autism.

Ouch! That touched a nerve 'cause I remembered doing that when I was a child. But surely I didn’t have THAT! I quickly dismissed that idea just as fast as it came into my head.

As an adult, I continue to have issues with social relationships and events. But with time I have kind of learned how to handle myself and have found what works best for me.

I want to mention Haley Moss here. In some mysterious way, she helped show me who I am and why I am the way I am. Of course, she doesn’t know that because I have never met nor talked with her in person.

Last year (2019) I saw a headline on the Internet about the "First Openly Autistic Lawyer". That caught my eye and I started reading about her. This in turned piqued an interest in autism in general. So, I began Googling for it and trying to learn as much about autism as I could. The more I learned the more suspicious I became that I do, in fact have it. I contacted someone at “Autism Speaks” and was given an online questionnaire to fill out on my own. It stated at the end that any figures highlighted in yellow are considered to be over the ASD threshold. Guess what? All of my categories were highlighted in yellow!

At first this was kind of a shock to me. But at least I now understand my own life and why I had so many social and learning issues. I now realize that I was really handicapped. And now, at age 67, I can look back and see that I am a relatively successful person in spite of this.

Everyday has been a struggle for me. I didn’t understand that life was so much harder for me because I was handicapped. Often, at the end of my day at work I got home completely exhausted. I just want to sit, read and not be talked to. But when you have a family, that’s hard to do. I thought everybody has days like I do. They don’t.
Hopefully some little kid growing up today won’t have to go through what I did. I think they understand a lot more about autism than they did 50 years ago although they still don’t know for sure what causes it.

Hello and welcome to Wrong Planet.

I have prosopragnosia so I was very clingy to my parents, especially to my Mum. Starting school. For the first couple of years during lunchtimes or playtimes (Breaks) I would just to to the same little spot every time and just stand there

Anyway. Welcome.

Hi and a very warm welcome to you ! Our first grade experiences were painfully similar Fred . I see that you are also into trains ! Good to have you with us.

Yes. Both Juliette and I are into model trains.

Welcome to wrong planet. It's good to have you here

Dear Juliette and "Mountain Goat",

What's up with the trains connection? Is there some kind of a connection between being interested in trains and autism? I was a train freak for as far back as I can remember – at least to age four.

Based on a couple of Haley Moss’s tweets, it sounds like she likes trains, too. What the heck? I have known people who were real, hard core railway enthusiasts who were most obviously NOT autistic and not all autistic people are fascinated by trains, so much is obvious, but, is there nevertheless a loose connection there?

By the way, I have mentioned Haley Moss’s name a couple of times assuming that everyone on this forum knows who she is but then again, a few might not know.

She was Florida’s "First Openly Autistic Lawyer". She has a nice website. If you “Google” for it you can find it.
I am not on Twitter but I have seen some of the things on Google she has tweeted. If anyone on this forum is on Twitter, I’d be interested to know what she’d say if asked about trains.

Welcome to Wrong Planet!

Uhmm. I have heard that amongst autistic people model railways (railroads) is popular. I have been into trains ever since I can remwmber whoch has to be at a very early age... Those little plastic trains I had before I was 2, and I even remember being taken to the local station in my pram where I saw a Western diesel come in and we went on the train, and this was a memory that was very early in my life as the very early 1970's was when they last ran down here, and I was born in '72... And another clue. The pram my Mum only used with me until I was about 6 months old (My Mum said she bought a pushchair after that... But she said when she took me on the train I was in my pram? It was certainly when I was very young, and I knew it was a Western years efore I knew what they were because of shape of the slopey front ends of the cab. Other locos in use all had flat ends in those days).

Also, when I was working as a bicycle mechanic, we had a day where of assessment to check we were safely assembling new bikes, as within the company mistakes had been made through inexperienced staff. (I am not against the idea of ensuring everyone is safe as it is important). Now I had to collect others from a certain store on the outskirts of my nearest city so we could meet at a certain location a further 40 or 50 miles away as it was a central point to assess from many stores. During this journey I had a conversation with one young man who worked in the city store and he said he was autistic. He asked if I was autistic and I said no (I didn't even know much about autism back then). He said it was strange because over 80% of good bicycle mechanics (Those who stay in the trade and are tallented at their job) are autistic. Actually within the last 5 or 6 years, I have had many such co-incidences like that where people have asked me if I had aspergers or autism, or made statements like that. I just didn't catch on! I have not been assessed yet but I am on the list. Am I? Am I not? Wait and see!

Last edited by Mountain Goat on 06 Feb 2020, 4:03 pm, edited 3 times in total.

Dear Fred,

Thanks for sharing the Haley Moss story, as I"d not heard of her. I read this about her, and had to learn more ... "After her diagnosis some parents wouldn’t let their kids play with Haley because they thought her condition was contagious.
At age nine Haley was obsessed with Harry Potter. She learned about her diagnosis when her mom, Sherry, told her, “Much like Harry Potter you are different from your peers and have magical powers. Beside an extraordinary memory, autism has given you strengths with computers skills, artistic talents, and a gift for writing. Different is not a bad thing. It is just different. And different can be extraordinary.” Source: https://the-art-of-autism.com/haley-moss-defies-dismal-expectations-and-becomes-first-autistic-lawyer-in-florida/

Mountain Goat inspired and encouraged me to reconnect with a past childhood interest after we met here on WP. He has had a lifetime interest in trains since childhood, and even worked on trains in Wales for a number of years. Anyway, to view a thread he put together where we've shared some photos of our trains, layouts etc ... viewtopic.php?t=376200

Yes, there's long been a recognised connection in regard trains and autism, it seems. The following was from a Telegraph article ... "Trains are an abiding passion for many autistic children, to the point that speech and language therapists (half) jokingly ask, ‘Does he like Thomas?’ when making a diagnosis. “On the one hand, it almost sounds like a cliché, because it’s such a classic interest that you read about autistic kids having all the time. But, my goodness, in the clinic it’s just so common, especially in young children,” says Tony Charman, professor of clinical child psychology at King’s College London, who specialises in autism."

Some interesting links on Trains & Autism ...

Why children with autism love trains (and the 10 best UK rail adventures for families)
https://www.telegraph.co.uk/travel/family-holidays/best-train-attractions-in-uk-and-why-kids-with-autism-like-trains/

Trains & the Human Mind
https://tocaboca.com/magazine/autism-toca-train/

Why Do Autistic People Like Trains?
https://autismsomeassemblyrequired.com/why-do-autistic-people-like-trains/

Anyway, Hope you enjoy it here, and feel free to come join us & share any photos or images you want of your trains/layouts etc in that thread in "Random Discussion" MG started up ...

Welcome to Wrong Planet .

I also wonder what the pdocs said to parents about kids like us back then. I read "Look me in the Eye" by John Elder Robison and he had been diagnosed sociopath as a kid. He kept wondering when he was going to turn into a murderer and later got an adult AS diagnosis .

I actually self diagnosed myself with Asperger's in college. This was in the late 1970s which was before Lorna Wing named and wrote about the "spectrum". I had read about Asperger's in a psychology book from the library. I think I knew about autism before this and I probably also knew I had things in common with those autistic people they were institutionalizing. Wouldn't make us want to go to a pdoc back then and discuss our concerns, would it .

I also wondered how close I came to getting kicked out of mainstream school. I remember getting a pdoc evaluation but don't know what they diagnosed. I think this was soon after starting school.

Greta Thunberg was actually my inspiration to look into what was going on in the autistic world. This girl is not only public about it but proud of it? After learning all I could about ASD, including much participation here, I understand my ASD way more than the "yup, I got some mild kinda autism" that I originally realized.

I like trains too. Model trains and real ones.

Mountain Goat,

Yes, I was fascinated by trains from a very early age. We lived in Connecticut in the late 1950s and there were several electrified lines in the area. This was the old New Haven Railroad. Here’s a picture:

https://www.tapatalk.com/groups/thenhrh ... t7442.html

My loving parents bought me a few different model trains but I had serious coordination problems and would become so frustrated that I’d scream and throw the locomotive across the room when I couldn’t manage to rerail it.

Remember, I was only about four or five at the time and no doubt my autism was also implicated in my behavior.
I also had at least a couple of “windup” or “clockwork” trains much like Christopher Robin in Winnie the Pooh.

Later we moved out West to Arizona where I spent much of my later childhood and early adult years.
In the late 1960s and early ‘70s, I was fortunate enough to make a couple of trips to the U.K. to visit my older brother who had relocated there, (He still lives in Lymington today),

We took a train trip up north to Kyle of Lochalsh. I have always been terrified of heights and didn’t know what was in store for me. We boarded a multicar “DMU” at Edinburgh and I rushed right up to the front to find a seat immediately behind the engine driver so I could look out the front. This route took us right smack dab over the Firth of Forth Bridge, YIKES! Pretty scary, that! Perfectly safe but just plain scary.

After arriving at Kyle we rode the ferry over to the Isle of Skye. On another trip we rode the two car DMU out to Aberystwyth and back. That was another GREAT ride! Unfortunately, we ran out of time there and, sadly, didn’t get to ride on the steam powered slim gauge train.

You also mentioned bicycles. I can’t seem to fix anything but I am indeed an avid cyclist. I do not drive a motorcar and ride my bike back and forth to and from work. (About 3½ miles each way). I’m in northern Indiana and do that right through the winter. This morning it was so icy that I had to just walk and push my bike. Hopefully the sun will come out later and melt the ice on the roads.

Last edited by AmtrakFred on 07 Feb 2020, 1:56 pm, edited 1 time in total.

Juliette,

Thanks ever so much for your lovely response. I believe that Haley Moss is a most remarkable person. I suspect that I would have at least a few similar experiences in my childhood.

She was fortunate in that they knew exactly what her problem was and worked on it. When I was a child, I don’t think they knew what was wrong with me. If they did know they didn’t tell me. I think that’s wrong to do that, don’t you? Haley’s mom leveled with her – mine did not. Although I cannot completely dismiss the possibility that she really did not know. That was very nearly 50 year ago that I was going through this and they probably didn't know as much about autism as we do today. My dear Mom has been dead for nearly 20 years now so I can't discuss this with her now.

However, surely they knew that something was amiss. When I was about 16 they put me on Ritalin. The Ritalin did nothing to help me and it precipitated epileptic seizures for me. I had NEVER had a seizure before I was put on Ritalin and after I was weaned off of it never had one again. I wish people would beware before they put their kids on Ritalin.

One thing about Haley is that I doubt she had the learning difficulties I did in her later school years. There is simply NO way I could’ve ever become a lawyer. I was lucky to make it through school at all never mind law school!
I would love to correspond with Haley but I’m afraid she’s become way too popular now to make that practical. A couple of e-mails sent were not returned. Sheesh! She’s probably getting thousands of them now.

Many thanks for the Autism & Trains links !

Yes. The Vale Of Rheiddol line. It runs on 1ft 11 1/2 inch gauge and I believe the locos are 9 ft wide. If you ever go on the line, I would avoid the open coaches unless you dress up warm! Is a lovely trip.

Cycling on ice in the winter. Been there and done that! Where I live, at times during snow, as I live on a hill, at times unless one happens to own a more capable 4WD vehicle (Some 4WD's don't make it) or a very lightweight front wheel drive vehicle, the bicycle is the only practical transport. (As if the going gets tough one can always walk the worst bits).
I did once try to ride the tricycle assuming it would be better in snow. No way! It was soo unstable. I soon decided to leave the thing and get the mountain bike instead. (I often used the touring bike but the only downside was snow getting stuck under the mudguards (Fenders)).
Where I live, there are 2 miles of a small minor road to reach a main road. During frost and snow, the main roads are gritted with salt and also kept clear. Of course that can be quite a job on its own, let alone trying to deal with the smaller roads!
So most of the time it was these first two miles of cycling on the road which followed the ridge of the mountain. This one morning there was an interesting crunchy frost which was about an inch thick. It was grippy enough and it was crunchy under the tyres. It had quite an interesting look to it. Anyway. I continued cycling towards the main road. There is a downhill gradient down to the junction of the main road. (Actually a crossroads). This gradient is not steep, but it's there.
Now I started going down this gradient so I put on the brakes. I noticed my front wheel had stopped. How come? By the time I realized why I was on the floor! There was a lyer of ice underneath the frost on this gradient going down towards the road.
There was often ice there on occasions and if it was snowy or seriously icy, I would go down on the grass verge for grip so I would not end up flying out onto the main road without stopping. I also do this in the car on occasions during such conditions. The steepest part if I had gone to the other main road two miles in the other direction at the bottom of the hill I would also drive down (Walk down on the bike as it is a steep 1 in 4) on the grass verge on the right which for us is the wrong side of the road, but it enabled the car to keep control. However, about 15 to 20 years ago the council put new signposts up on this verge, so we can no longer do this.

Hi Fred,

The fact that you were put on ritalin and the resulting seizures! Woah ... I thank my lucky stars that I wasn't diagnosed as a child, as I believe it would have severely held me back. I dread to think. That's not to say that others wouldn't benefit hugely from assistance as children, but I was allowed to just be myself, expectations weren't lowered. I had just lost my mother to a brain haemmorhage prior to starting Infants School in Australia, so this is what teachers, my Father etc assumed was behind my mutism etc... I could speak, but the loss, and the new school environment was overwhelming. Thankfully, my Mother had known instinctively to keep me busy with art/craft activities, reading, etc throughout the day, and she was amazing. The first five years of a child's life are critical, so I feel very fortunate to have at least had her in my life for that long.

Like yourself, I'm left wondering how much my parents really knew about the autism factor too. My father is clearly HFA. He's a hermit now. Certainly, little was known about autism, even 20 years ago ... so many harmful "treatments", "cures" etc were trialled on people back then, and even today this still goes on(eg The Judge Rotenberg Centre in the US, those who went through chelation treatment, and extreme forms of ABA which seek to stamp out stimming, and in some cases, does not recognise the child as having his/her own needs that are separate to that of a neurotypical child. The "defective" model never sat well with me.

Yes, I imagine Haley would be very busy in her life, especially being a lawyer, and she would need her free time to destress from all that. There have been other high functioning lawyers that I've known of, some 20 years ago. Along with, Doctors, Teachers, Scientists, Actors, Directors, etc etc ... in fact it's good to see many of the myths being torn down now over the ability of people on the spectrum to become such things, and have careers and lives. Some of the greatest innovators were on the spectrum.

I'm sorry that you didn't receive the extra support and assistance you needed when younger, as you wish you had. Having worked with children and young adults on the spectrum for many years, I've seen the benefits of ensuring children are kept safe via structure to their day, and consistent responding. Alot of meltdowns occur due to an escalation in response, like throwing petrol on a fire, and if parents are given the tools and information, it can make a world of difference in ensuring their child matures into a responsible adult, so can self manage out there in society.

I was mostly held back by growing up with a father who still doesn't believe that women should work. I knew what I wanted to do with my life by the age of 14, was very shy and quiet, but felt well-liked. Was very sporting(crazy about gymnastics, swimming, long distance running, handball, tennis etc). Sports really helped me, though these were mostly solitary sports, though competitive, not that I cared about winning. I wanted to work with children, and it was only after getting a job, moving into my own apartment at 18, could I then save for University... and finally, achieve my dreams.

Did you grow up with brothers and sisters who may also have been on the spectrum?

Carl,

Yeah, I was kicked out of at least two schools. My parents took me out of a third school before they had a chance to kick me out.

One thing I can relate is that I was terrified of shots (injections). Back in those days, the doctors would often give kids a shot of antibiotics or something. I was terrified of that.

One time when I was sick my Mom took me to the doctor. He came in to examine me and I told him to absolutely PROMISE me that he would not give me a shot. He did but then later changed his mind and decided he needed to give me one afterall. So, he wheeled this cart in (or the nurse did) with all the injection paraphernalia on it. (That was before disposable syringes).

I screamed at him "YOU B@%&$* ! I swore at him and I'm reluctant to post here what I said. I NEVER used that kind of language when I was a kid but I had a complete and total "melt down". I jumped off the examination table and went over to the cart and kicked it over. Stuff went flying every which way. Then I ran out of the doctor's office and out of the building and locked myself in the car. My mom was really red faced when she came out!

I think I took a lickin' for it when my dad got home. Just recently I read where autistic children can sometimes have extremely low pain thresholds. I believe I was one such kid. The adults and doctors in my life had absolutely NO idea how much those shots hurt me. I still don't like to get shots today - nobody does - but I don't think they hurt me as much as they did when I was a child.

I am wondering... As if I have a haircut and bits of my hair are in my tee shirt etc (Even after several washes), the little bits of hair will be not just irratating, but to the point of being painful near my skin. I have very sensitive skin in certain areas which are not the common areas to have sensative skin.
Once when in school a kid played a joke and put fibreglass down my neck. It was one of the worst experiences. Blood was coming from my back etc. I had to stay in the clothes... It was aweful.