Autism

[Crazy Days]

8 yr old grand-daughter has just been diagnosed as being autistic and waiting on further results if she has ADHD or learning disability.  News was a kick in the balls and finding it hard to get the head round. She was born very premature and had a slight bleed on the brain but seemed normal.  Knew there was some degree of difficulty in her concentrating in the class room.

Concerns were raised and a private assessment has confirmed she is autistic and may be medium in the spectrum. Have no idea what her future may hold although she may need to go to specialist learning. She holds conversations etc well as far as we can see and appears bright enough, although there are issues with her eating lots of different food.

Really have no idea what all of this means.

Anyone with any similar knowledge or advice would be gratefully received.

[ICTChris]

There will be other posters who have direct experience of having autistic relatives etc who can give you better advice but from knowing some people who are in education and care professions I think there is much better provision for autistic children than there was in previous years. I know that mainstream schools are now more set up to help educate children on the autistic spectrum and that it's common for provisions to be made for them.

 

[Adolfo Rios]

My son (10 years old) is autistic, what would be classed as "high-functioning" - although I don't like that phrase personally.  He goes to an additional needs school and whilst I understand your fears etc your grand-daughter will grow up to be whatever and whoever she wants to be. 

Kids, and adults, can get the right support and environment that can make them strive as has been the case for my boy.  Other than having a touch of dyspraxia (he's can be prone to tripping up a lot) he is a perfectly "normal" kid with a memory that would put MANY to shame.  Autistic doesn't mean unintelligent.  It won't be easy at times but you will all find what works in time.  

 

Edited August 10, 2022 by Adolfo Rios

[Boo Khaki]

I'm autistic. Only thing I can really offer right now is a link to what I think is the best representation of what Autism actually is for the uninitiated.

https://themighty.com/topic/autism-spectrum-disorder/autism-spectrum-wheel

I don't have any experience of autistic children apart from my own childhood, obviously, but I'm happy to talk about it from my adult perspective if you have any questions. It is important to note though that I can only give you my own personal experience, and any other autistic individual is likely to give you a totally different story. Autistic people are just as distinct and different from each other as neurotypical people, but there usually is some degree of commonality even if there's not one particular thing that we all do or feel.

[Jacksgranda]

2 hours ago, Crazy Days said:

8 yr old grand-daughter has just been diagnosed as being autistic and waiting on further results if she has ADHD or learning disability.  News was a kick in the balls and finding it hard to get the head round. She was born very premature and had a slight bleed on the brain but seemed normal.  Knew there was some degree of difficulty in her concentrating in the class room.

Concerns were raised and a private assessment has confirmed she is autistic and may be medium in the spectrum. Have no idea what her future may hold although she may need to go to specialist learning. She holds conversations etc well as far as we can see and appears bright enough, although there are issues with her eating lots of different food.

Really have no idea what all of this means.

Anyone with any similar knowledge or advice would be gratefully received.

I don't know where you are at, but a private assessment counts for f*** all here, has to be confirmed by the educational physcologist.

2 of ours are autistic, maybe even 3. 1 attends main stream school where he has a quiet room he can retire to, no questions asked when it gets too noisy for him. (Or whatever else annoys him.) He is above average intelligence, although no genius. His social skills aren't too bad, but he does take things somewhat literally. Don't think there are any dietary issues. He's 14.

Another attends a special school, that's because his speech was absolutely incomprehensible, this particular school concentrates on speech, and he's a new man. He's 11. However, he has a temper and whatever he wants has to be RIGHT NOW. This is not always accommodated, and his temper tantrums wear off. I think he uses it some of the time just for attention. (He has a sense of humour.) His diet was so bad there was talk of him going into hospital and getting tube fed, eventually the dietician conceded to feed him whatever he'll eat. (His GP had already said the same.) His eating fads change from week to week, what he would eat last week he won't eat this week. He looks like an 8/9 year old, particularly compared to his brother who is 12 and has shot up these last few months. There is nothing wrong with his intellect.

There is some concern that their younger sister (7) might also be on the spectrum. Her speech isn't as clear as it could be and she currently attend speech therapy. She can hold conversations and understand what she's being told. She will be going into primary 3 next year. She's a picky eater but will always eat something. Nothing wrong with her intelligence either. Seems to mix with other children allright.

We fostered an on the spectrum child/young adult for 18 years, he ended up in a special school where he thrived, being the most able, mainstream schools weren't for him. His speech was poor, and speech therapy didn't really make a lot of difference. There were only certain foods he would eat but he ate them. He now lives in supported accommodation and is doing well, again he would be one of the most able and is also one of the youngest in this environment. Unfortunately we haven't seen him since the pandemic, as we are all in the vulnerable category. His social skills wouldn't be the best, but nothing too disastrous. He would take things literally, one time I said "It's raining cats and dogs" and he looked out the window a bit puzzled. He's certainly no fool, but could be easily manipulated. *

I don't know if that is much use to you, but autism isn't the end of the world (I know there are some very severe cases), once diagnosis is confirmed, strategies can be put in place.

* ETA: He had a vicious temper when thwarted (he didn't like being caught out in a lie, for instance), and the police had to be called on more than one occasion. He was quick as lightening, too, and had the thing done before you saw him. He punched his foster sister one time as he didn't like a remark she passed. He also had itchy fingers and had to be watched like a hawk in a shop. My wife could always tell whenever he was going to explode - his eyes glazed over and he went very pale - and would get out of the room pronto, as she was the one he went for. The police were called more than once (they were very patient with him) and he was removed from the house once. I think that shook him up a bit. His physcologist said he would never learn until he was behind bars. However, mostly it was dead boring, tbh, violent outbursts were few and far between and most of the time you wouldn't have known he was in the house. He learned behaviours re socialising from other folk and that helped him fit in, but all in all he was a good lad, really. He had a kind heart in many ways, whenever he was out spending his pocket money he always bought 3 of the grandchildren (who regularly visited) presents.

 

Edited August 10, 2022 by Jacksgranda

[Brother Blades]

I’m not certain but I think @RH33 has experience of this, but I believe she may be busy with her new house at present?

Apologies if I’m incorrect. 

Anyway, good luck to the OP, it’s only a diagnosis, doesn’t change who your granddaughter is & hopefully can only improve things. 

[senorsoupe]

My wife works with persons with disabilities and Autism is a wide spectrum.  Your granddaughter was diagnosed early enough and with the right supports in place she will likely be pretty OK.  Autism isn't necessarily a bad thing, people with the condition just see the world in a different way.  I don't know what the supports are in Scotland, but here in Canada it can be a bit patchwork (the province I live in is a disaster), but the correct program will do wonders for her

[BFTD]

1 hour ago, Crazy Days said:

8 yr old grand-daughter has just been diagnosed as being autistic and waiting on further results if she has ADHD or learning disability.  News was a kick in the balls and finding it hard to get the head round. She was born very premature and had a slight bleed on the brain but seemed normal.  Knew there was some degree of difficulty in her concentrating in the class room.

Concerns were raised and a private assessment has confirmed she is autistic and may be medium in the spectrum. Have no idea what her future may hold although she may need to go to specialist learning. She holds conversations etc well as far as we can see and appears bright enough, although there are issues with her eating lots of different food.

Really have no idea what all of this means.

Anyone with any similar knowledge or advice would be gratefully received.

My son's what they refer to as "on the spectrum", although I think the terminology has changed. He was diagnosed with Asperger's Syndrome after starting at nursery school, as the staff noticed that he wasn't relating to the other kids as they would have expected at his age, and was generally in his own world to an extent. I hadn't noticed, as I was a part of his world so he had no issues communicating with me, and I still feel terrible that it took other people to see what I hadn't. I'm frankly tearing up just at the memory of it.

It's horrible to find out that your child has any kind of issue, but the important thing to remember is that high-functioning autism is more to do with the way a person views and relates to the world than a condition that should be cured. Like Boo Khaki just said, your grand-daughter will have her own quirks and difficulties, but with support from her family and school, she'll likely do just fine in life. Some employers actively look to hire autistic people, although it can be for reasons of exploitation.

My son's just starting his Highers this year, having done well on the National 5s; I don't think most people would realise that he's an ASD kid these days, but there are some tells that I'm sure knowledgeable people would pick up on.

• He's shy; I've been working for years to get him more comfortable with approaching strangers, and he still comes home to tell me when he talked to somebody new and didn't avoid the conversation.
• He's big on routine; I had to work out years ago that, if we were going to do anything new and (most importantly) not do something we regularly did as a result, it behoved everybody to give as much notice as possible, with regular reminders in the days before it happened. He can cope with change much better now, but it would feel rude to spring things on him when I know it's an issue. An example from today is that I asked if he fancied going out to see a film, but we decided to wait for another day as I could see the initial confused reaction of "what, that's not what I thought I was doing today!"
• He has the issues with food that other people have mentioned. There was a time - a hellish, frustrating time - when he would only eat three or four things, most of which weren't very healthy, and it took me a while to realise that this wasn't just stubbornness. I still don't quite get it, but I think he has the idea that any new food is going to be gross and unpleasant, so why put yourself through the ordeal of trying it? He's gradually worked up to a more varied diet, but it's taken a lot of effort to keep plugging away with new things and re-introducing old failures at a later date. I can only recommend patience, and reminding yourself that a temporary shite diet isn't the end of the world. Tonight mine's having lamb lung, mashed potatoes, and peas, all of which are things he'd have baulked at five years ago (and I can't stomach lung myself TBH).
• He can't cope with background noise. This is something that only came in a few years ago, but it's a problem. Basically anything that's going on if he's trying to concentrate on something makes it that he has to stop. We're still working on that one.
• Anger and frustration caused by any of the above. He can still have a total meltdown if everything gets too much for him and he can't cope with it. Been a while, but we had a full-blown tantrum earlier in the year due to the noise thing. That's the worst part as a parent, seeing your kid banging his head off the floor in despair that things aren't the way they should be. It can be difficult to get your head around the idea that it's not an attention-seeking thing, or a Veruca Salt type demand to get whatever they want, but genuine internalised frustration. I wish I'd worked that out a long time before I got the idea.

Basically, encourage her parents to find out which schools have the best ASD facilities in the area, as it'll make a huge difference. My son's school has a whole department for ASD kids to work in, and they can attend class with the other kids if they feel able. Thankfully he was accepted there, as the Academy he'd have gone to otherwise basically had an empty classroom that they banished ASD kids to, and the classroom changed depending on what rooms were needed that day. My mind reels at the thought of that, and I reckon the poor kid would be in a hell of a state by now after years in that environment.

Other than that, patience and keep asking yourself the question, "why is she doing this?" There's always a logical answer, it just might not seem logical to you, and it might take you a while to work it out. Also, be prepared to feel guilty for not knowing everything.

Edit: Jacksgranda just reminded me of something - taking things literally. At one point I discovered (from one of the teachers at his school) that my son really didn't get the whole sarcasm thing, and just thought that sometimes his dad was mean to him. Now that was a horrible day. Just imagine discovering that, whenever you called your kid a daftie or jokingly said you would skelp their arse, they worried that you thought they were stupid, or might seriously batter them.

So, yeah, that took work too. Being literal about everything doesn't work, as that'll leave them unprepared for the outside world, so there was an awful lot of "I was smiling, that was a joke" after flippant comments.

f**k's sake, this thread's bringing back horrible memories about my own inadequacy!

Edited August 10, 2022 by BFTD

[Derry Alli]

My big brother is exactly the same as BFTD describes his son. He wasn't diagnosed until his 30's though so struggled growing up.

[Loki]

Getting a diagnosis at times can be very difficult as they would score you on three things - social interaction, social communication and repetitive behaviours.  Some children will score highly in two of them but not the third.  It was especially difficult for girls to be diagnosed as the tests were designed by men for men, and men generally had a higher level of systemisation in their behaviours, so girls performed poorly in those tests.  At one point the diagnosis was about one in eight being girls but as the testing has improved it's about one in four now.

At placement in a Primary School there was one little boy that was uninterested in pretty much everything the teacher tried to do.  He was miles behind in his mathematics and I was given him as a project.  But it turned out he was an obsessed Aberdeen fan.  If you made any maths problem about Aberdeen he would solve it almost instantly.  But if you asked him the same question without the Aberdeen narrative he'd look out the window and disengage.  

As others have said each individual will be unique, and if you can find some online tests you might be surprised at how highly you score in some metrics.  It certainly isn't anywhere as bad as it was even twenty years ago, and every day more is being learned about it.  Good luck.

P.S  Autism trivia - Simon Baron-Cohen is probably the most well known researcher in the autism field.  He is the cousin of Sasha Baron-Cohen.

[Jacksgranda]

1 hour ago, BFTD said:

 

• He's big on routine; I had to work out years ago that, if we were going to do anything new and (most importantly) not do something we regularly did as a result, it behoved everybody to give as much notice as possible, with regular reminders in the days before it happened. He can cope with change much better now, but it would feel rude to spring things on him when I know it's an issue. An example from today is that I asked if he fancied going out to see a film, but we decided to wait for another day as I could see the initial confused reaction of "what, that's not what I thought I was doing today!"
•  

Very much this, also.

[BillyAnchor]

I worked for many years with college/university students on the spectrum. Feel free to reach out with any specific questions but it is far from the end of the world, many lead very fulfilling lives and are just quirky. 

[Florentine_Pogen]

https://en.wikipedia.org/wiki/The_Curious_Incident_of_the_Dog_in_the_Night-Time

Medical professionals' reviews

Alex McClimens, whom Muller quoted above, also wrote: "This magnificent essay in communication is compulsory reading for anyone with the slightest interest in autistic spectrum disorders. This book is also required reading for those who simply enjoy a fascinating story... we are offered a first person narrative to match anything by contemporary writers. Mark Haddon has created a true literary character and his handling of the teenage Asperger's heroic adventure is brilliantly crafted. He uses the literal mind-set of his hero to mask the true direction of the plot."^[32] Reviewer Paul Moorehead calls the book "a fairly ripping adventure story" and writes: "It's also quite a feat of writing. The actual use of language is somewhat austere—an unavoidable consequence of having a boy with autism as a narrator— but it has its own beauty, and it works. So persuasive and so effective is the construction of Christopher, not only is he a character you're rooting for, he's also the character in the story you understand the best. It's startling how believably and comfortably this story puts you into what you might have thought were likely to be some pretty alien shoes."^[33]

Reviewer David Ellis, naming The Curious Incident an "ambitious and innovative novel", wrote that Haddon "manages to avoid the opposing pitfalls of either offending people with autism and their families or turning Christopher into an object of pity. Instead of becoming the focus of the plot the autism enhances it. The unemotional descriptions amplify many moments of observational comedy, and misfortunes are made extremely poignantly." He concludes that Christopher's story is "far more enjoyable and likely to stay with you for far longer than any medical textbook".^[34]

[Raidernation]

I just started work at a school that caters solely for autistic/Asperger’s students (US high school so effective S3-6)

They are all referrred from surrounding school districts after assessment so it’s not like they get “dumped “ on us. 
So far I’ve just done the extended school year session which was 5 weeks up to July12th so not much actual teaching, more co-teaching and extracurricular stuff but it gave me a chance to get to know them and more importantly for them to get used to seeing me.

 

We start back tomorrow, the students on Monday. I’ll happily let you know how it goes and I’ll gratefully accept any suggestions.

As part of my contract I’ll get trained in an LBS1 qualification (Learning Behavior Support) so it’s going to be a new experience for me.

To give you some idea my class sizes range from 7 to 3 and there are probably as many qualified therapists and social workers on staff as teachers.

Yes, it’ll be a challenge as my previous experience has been trying to teach these kids in general Ed. math classes as they always get included there even if they’re withdrawn from other classes (!) but I’m really excited.

 

Good luck to those of you with family members that are in this group, I wish there were more schools like mine about to really cater for them.

[RH33]

12 hours ago, Brother Blades said:

I’m not certain but I think @RH33 has experience of this, but I believe she may be busy with her new house at present?

Apologies if I’m incorrect. 

Anyway, good luck to the OP, it’s only a diagnosis, doesn’t change who your granddaughter is & hopefully can only improve things. 

@Gaz, I hope you don't mind tag as you've spoken openly on here about your challenges as a parent with ASD children.

I worked with an autistic child and got on like a house on fire. I'm very passionate about all ASN kids getting the best oppertunities they can and he was being so badly failed. 

BPD (my condition) and autism are often diagnosed as one or other in late teen girls as girls can mask autism well and often present with catastrophic mental health collapse when the poor souls can't cope.

Two my kids are dyspraxic, one with quiet bad dyslexia too. No autism but I know the fight it takes.

The education authority will.need an educational psychologist and peads report not a private one. So start stamping on heads in NHS and education now as it takes years as the nursery/school have to build evidence before the child is given additional funding. Apply for child disability payment and use that to help fund additional oppertunities designed for ASN. 

Park Mains in Erskine has an autism unit were the kids are educated part of the day and integrated where they can. It really is just your luck I'm afraid in mainstream as to how many hours ASna hours the school are allocated andnhow that is then broken down to classes. Then how well the teacher copes and is willing to adapt. 

Anyway as I said, others have experience of autism much more closely, I'm just a lay person who's had to fight for other diagnosis and has interest in autism.

 

 

 

[Crazy Days]

Many thanks to all who have replied - you have been a great help. 

thanks

[BFTD]

1 hour ago, Crazy Days said:

Many thanks to all who have replied - you have been a great help. 

thanks

Not sure if that came across, but my main suggestion is not to worry; keep asking questions, be a supportive grandparent, help her parents if they need it, and the wee girl you love will thrive.

You already know that being a parent takes work; this time you've just got different things to learn about and make mistakes over  

[Richey Edwards]

I am "neurodivergent". I am Dyspraxic and also on the Autistic spectrum. I am 32 years old today, and have had people talk down to me and tell me that I would never amount to anything because I am too stupid and too different.

Here are examples of things I have struggled with at various stages, and how they were resolved/dealt with.

1. Tying shoelaces. I learned how to do this using the "bunny ears" method. I still use this method to tie my laces.

2. Riding a bike. I did not learn how to ride a bike until I was about ten. This was partly due to the balance issues of Dyspraxia, but a big part of this was confidence. I was frightened of falling off the bike and hurting myself. Once I got over this fear it was easy though.

3. Mathematics. I struggled with anything more complicated than addition and subtraction, and even at that I often double-check and triple-check that I have correctly worked sums out. I was good at other school subjects but always struggled with maths, and was often in the lowest maths group. My university course required me to sit a pre-entry mathematics exam, so I had to basically teach myself how to do maths in order to prepare for this. I have managed to get the hang of them though, and I sit regular numeracy tests at university and have got full marks for all of them. No one at school had ever gone through how to actually do equations etc with me, and I would have done better at school if someone had done that.

4. Social skills - I don't always say or do the "socially acceptable" thing in situations, and I dislike situations that involve engaging with a lot of people who I do not know. This is something that has improved as I have got older though.

5. New routines - I am a creature of routine and do not like it when that routine is disrupted. I like to plan things and get anxious when things don't work out how I thought they would or how I wanted them to. I realise that unforeseen things happen, and it's important to stay calm and deal with them and not get anxious about things that I cannot control. I cannot control external events, but I can control how I am going to react to them.

 

I was told by various people that I would never be able to hold a responsible job, or go to university to become a mental health nurse, or drive a car because my condition made me a "liability". I have done all of those things that I was told that I would never be able to do. Not bad for someone who was called "a spastic" and "a retard" by certain people.

 

The absolute best thing that can be done for your grand-daughter is that she is given love, respect and acceptance as she grows up. A diagnosis can provide an explanation, but a diagnosis does not define who she is. With the right support and guidance, the diagnosis will not prevent her from growing up to be who she wants to be and do what she wants to do.

 

Anyway, I have rambled on. I hope at least a little bit of what I have said has been useful. I wish your grand-daughter, your family and yourself the very best.

 

Best wishes,

Jamie

[Rugster]

16 minutes ago, Richey Edwards said:

I am "neurodivergent". I am Dyspraxic and also on the Autistic spectrum. I am 32 years old today, and have had people talk down to me and tell me that I would never amount to anything because I am too stupid and too different.

Here are examples of things I have struggled with at various stages, and how they were resolved/dealt with.

1. Tying shoelaces. I learned how to do this using the "bunny ears" method. I still use this method to tie my laces.

2. Riding a bike. I did not learn how to ride a bike until I was about ten. This was partly due to the balance issues of Dyspraxia, but a big part of this was confidence. I was frightened of falling off the bike and hurting myself. Once I got over this fear it was easy though.

3. Mathematics. I struggled with anything more complicated than addition and subtraction, and even at that I often double-check and triple-check that I have correctly worked sums out. I was good at other school subjects but always struggled with maths, and was often in the lowest maths group. My university course required me to sit a pre-entry mathematics exam, so I had to basically teach myself how to do maths in order to prepare for this. I have managed to get the hang of them though, and I sit regular numeracy tests at university and have got full marks for all of them. No one at school had ever gone through how to actually do equations etc with me, and I would have done better at school if someone had done that.

4. Social skills - I don't always say or do the "socially acceptable" thing in situations, and I dislike situations that involve engaging with a lot of people who I do not know. This is something that has improved as I have got older though.

5. New routines - I am a creature of routine and do not like it when that routine is disrupted. I like to plan things and get anxious when things don't work out how I thought they would or how I wanted them to. I realise that unforeseen things happen, and it's important to stay calm and deal with them and not get anxious about things that I cannot control. I cannot control external events, but I can control how I am going to react to them.

 

I was told by various people that I would never be able to hold a responsible job, or go to university to become a mental health nurse, or drive a car because my condition made me a "liability". I have done all of those things that I was told that I would never be able to do. Not bad for someone who was called "a spastic" and "a retard" by certain people.

 

The absolute best thing that can be done for your grand-daughter is that she is given love, respect and acceptance as she grows up. A diagnosis can provide an explanation, but a diagnosis does not define who she is. With the right support and guidance, the diagnosis will not prevent her from growing up to be who she wants to be and do what she wants to do.

 

Anyway, I have rambled on. I hope at least a little bit of what I have said has been useful. I wish your grand-daughter, your family and yourself the very best.

 

Best wishes,

Jamie

Great post, and happy birthday.

[Richey Edwards]

5 minutes ago, Rugster said:

Great post, and happy birthday.

Thanks mate.