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Jon81
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05 Nov 2020, 4:06 pm

We're just formalities away from getting our second son diagnosed with autism. To begin with I didn't see this coming. When we learned about our first son being autistic our second son had just been born. I obviously followed him closely from that point. He did imitate things like new borns are suppose to do. He also did some pointing and waiving. At about 12 months I started to notice he had a bit of trouble looking straight at me when lifting him up. He also stopped the pointing. Then came the running around, and from there it's full blown autism. He's in love with farm animals and listens non-stop to 'Old Mcdonald had a farm' on youtube 8O Loves looking at horses and cows. Perhaps he will become the new Temple Grandin.

Something I noticed with both boys is they seem to have a kind of moment when they look like a big flashlight is pointed into the eyes. Don't know how to explain it really. It's just as if something is crashing inside. Not epilepsy. Just thought I'd add that as a side note.

We're going to have them DNA tested in november to see if there's something going on with the chromosomes. The first scan we had didn't reveal anything. This test will go a bit deeper. It's obvious it's something DNA related as all second cousins from one family I know of have autism. One NT second cousin from another family has a kid with asperger. Then there are several other cases with the older generation - however, there are no diagnoses, as is normal with the older generation. My brothers' first born boy is in the process of getting his diagnosis. That diagnosis was something we saw coming from a mile away. Much, much more obvious than my boys were, but because they turned their heads into the sand he's now approaching 7 years of age - and no help. He struggles a lot now that he's in school. He can't dress himself, can't play with other kids, can't eat anything but french fries and cold hotdogs. He somehow learned how to speak (age 4,5-5) and seems OK in many ways. Will be interesting to see what kind of level he'll end up with.

Somehow it's easier for me to melt the fact that it's genetic rather than some vaccine or other environmental factor. At least I know it is generated from what we carry in our DNA. We still love our kids so much we are already making plans for the third child. Anyone else out there with a crazy amount of relatives on the spectrum like me?


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jimmy m
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05 Nov 2020, 8:27 pm

One of our member Jason Lu, wrote a book titled "Eikona Bridge". He is autistic and has a son and daughter who also are autistic. He describes in his book a very unique way he helped to teach them.


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06 Nov 2020, 8:40 am

There can be an infrequent reaction to vaccinations like brain inflammation and swelling that in rare cases lead to brain damage similar to classic autism.

Aspergers is more a neurological variant of increased neural sensitivity, complexity, or processing speed. As a result, it tracks with other heritable traits.

Since so little is known about the mechanism of causation, it might be more productive to focus on what techniques and methods may provide the best development of coping and management skills.



fez
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07 Nov 2020, 10:53 am

Hej (also Swede, but living abroad)

There is no clear proven hereditary line in my family, but I am pretty sure that my dad is autistic (undiagnosed and now in his mid 70s) and I think it may have come through his father (we never knew him, so can't be sure but some indicators). I self identify as autistic. My oldest daughter has a formal diagnosis. My younger daughter has no diagnosis and whilst she has clear sensory differences, I wonder if it is more likely that she is an ADHD-er. I am of the school of thought that few things can be that neatly categorised and current diagnostic processes leave quite a bit to be desired. However, I am sure both my children are neurodivergent in one way or the other.

I'm interested in how you found the diagnostic process in Sweden. I am a specialist assessor for dyslexia and other specific learning differences in the UK so always keen to hear how things are done in Sweden. I know of a boy that I have been 100% convinced is autistic for about 3 years or more now but his 'dagis' and forskola' never investigated. I was always surprised by this. Did you have to push for and instigate the diagnostic process for both your sons?


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debianator
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08 Nov 2020, 6:02 pm

My son is ASD, I’m either ASD or ADHD or ASD (going through testing now), my middle child is ODD (undiagnosed) but symptoms, my oldest is testing for ADHD.

I truly believe my son and middle child inherited from my wife’s side and I and my oldest have a form of dementia so you are not alone.



SocOfAutism
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10 Nov 2020, 8:20 am

debianator wrote:
My son is ASD, I’m either ASD or ADHD or ASD (going through testing now), my middle child is ODD (undiagnosed) but symptoms, my oldest is testing for ADHD.

I truly believe my son and middle child inherited from my wife’s side and I and my oldest have a form of dementia so you are not alone.


Some “symptoms” of ADHD and autism overlap. When ya’ll get your diagnoses back don’t see them as hard facts. You’ll have to move around in them awhile, so to speak, to see how they fit. I have known some people to formally test negative for a diagnosis, when that diagnosis seemed to fit them perfectly. And other people carry around empty diagnoses that they never “use”. You’ll just have to see.



Jon81
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13 Nov 2020, 5:15 am

fez wrote:
Hej (also Swede, but living abroad)

There is no clear proven hereditary line in my family, but I am pretty sure that my dad is autistic (undiagnosed and now in his mid 70s) and I think it may have come through his father (we never knew him, so can't be sure but some indicators). I self identify as autistic. My oldest daughter has a formal diagnosis. My younger daughter has no diagnosis and whilst she has clear sensory differences, I wonder if it is more likely that she is an ADHD-er. I am of the school of thought that few things can be that neatly categorised and current diagnostic processes leave quite a bit to be desired. However, I am sure both my children are neurodivergent in one way or the other.

I'm interested in how you found the diagnostic process in Sweden. I am a specialist assessor for dyslexia and other specific learning differences in the UK so always keen to hear how things are done in Sweden. I know of a boy that I have been 100% convinced is autistic for about 3 years or more now but his 'dagis' and forskola' never investigated. I was always surprised by this. Did you have to push for and instigate the diagnostic process for both your sons?


Yes, I know exactly what you mean with kindergarten and not wanting to investigate. They were all in denial about our first son, which is something I can understand since it was new to them. What makes it weird is they didn't understand what was going on with number two. I was trying to tell them he was going to need some extra help and they just went along treating him like anybody else. Trying the ordinary feeding methods, letting him be on his own with one toy because he was happy that way, expecting language to appear out of the blue, expecting him to UNDERSTAND language, not bothering using pictures. List goes on.

Parents of NT kids just can't seem to get it around their head these kids are not functioning the way other kids do. What is more frustrating is the same people who can't understand it will also be the people working to improve the skills of our kids. Our oldest son now has a person dedicated to his needs 50% of the day, and that person also happened to have a son of her own with autism (asperger though). At first she was just meant to play a different role, taking care of the other kids. We insisted on switching over so she would be the one in control. I hope that was the best choice.

The process in Sweden is a bit slow unless you want to fork up the money on the table yourself. First a lot of people with hardly no knowledge at all will need to give their two cents. If you manage to convince them you'll be seen a child psychologist - this is where you meet someone who actually understand you. Our first kid needed 2-3 minutes of display before the psychologist knew what was going on. Then there is some paperwork, they'll need to check for other conditions such as hearing. We never managed to complete the hearing test as it's really hard to get them to cooperate as you probably know. We always get told how professional these doctors are, and once you get there they'll be completely ignorant to the challenges of putting something into your kids ears/eyes/mouth or whatever. Complete disaster.
You'll get to do the ADOS and other evaluations. I would say a rather smooth process takes about 8-9 months to complete. It can take almost up to 2 years in some cases when the list is longer. We payed a professional for the first diagnosis - took about 2 weeks. On monday we are getting the second diagnosis for kid number two - and that one took about 8 months.


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Din neurotypiska (icke-autistiska) poäng: 108 av 200
Du verkar ha både Aspie och neurotypiska drag


Juliette
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13 Nov 2020, 1:07 pm

Jon81 wrote:
We're just formalities away from getting our second son diagnosed with autism. To begin with I didn't see this coming. When we learned about our first son being autistic our second son had just been born. I obviously followed him closely from that point. He did imitate things like new borns are suppose to do. He also did some pointing and waiving. At about 12 months I started to notice he had a bit of trouble looking straight at me when lifting him up. He also stopped the pointing. Then came the running around, and from there it's full blown autism. He's in love with farm animals and listens non-stop to 'Old Mcdonald had a farm' on youtube 8O Loves looking at horses and cows. Perhaps he will become the new Temple Grandin.

Something I noticed with both boys is they seem to have a kind of moment when they look like a big flashlight is pointed into the eyes. Don't know how to explain it really. It's just as if something is crashing inside. Not epilepsy. Just thought I'd add that as a side note.

We're going to have them DNA tested in november to see if there's something going on with the chromosomes. The first scan we had didn't reveal anything. This test will go a bit deeper. It's obvious it's something DNA related as all second cousins from one family I know of have autism. One NT second cousin from another family has a kid with asperger. Then there are several other cases with the older generation - however, there are no diagnoses, as is normal with the older generation. My brothers' first born boy is in the process of getting his diagnosis. That diagnosis was something we saw coming from a mile away. Much, much more obvious than my boys were, but because they turned their heads into the sand he's now approaching 7 years of age - and no help. He struggles a lot now that he's in school. He can't dress himself, can't play with other kids, can't eat anything but french fries and cold hotdogs. He somehow learned how to speak (age 4,5-5) and seems OK in many ways. Will be interesting to see what kind of level he'll end up with.

Somehow it's easier for me to melt the fact that it's genetic rather than some vaccine or other environmental factor. At least I know it is generated from what we carry in our DNA. We still love our kids so much we are already making plans for the third child. Anyone else out there with a crazy amount of relatives on the spectrum like me?


I come from a family where my father was on the spectrum, as was his father(they did amazing things in their lives). I wound up with 4 brothers and a sister on the spectrum. I agree with your thoughts that autism appears to be genetic, rather than caused by environmental factors or immunisations.

You have such a good attitude and that can only help your children to go on to be and do all that they were ever meant to become/achieve. Acceptance and support makes a massive difference. Raising a child on the spectrum isn’t easy, that’s for sure, but I love seeing what can be an amazing outcome in adulthood, compared to the struggles and trauma parents can experience when their children are younger. All an autistic child really wants is to feel safe and secure and to know they can depend on those in control of their environment/s as life essentially “happens” to a child who is very young and on the spectrum, hence the fear and behavioural issues that can develop, and require managing. Life can be very frightening to a young autistic child who needs consistency in all areas from adult responding to routine.



Jon81
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18 Nov 2020, 4:02 pm

SocOfAutism wrote:
debianator wrote:
My son is ASD, I’m either ASD or ADHD or ASD (going through testing now), my middle child is ODD (undiagnosed) but symptoms, my oldest is testing for ADHD.

I truly believe my son and middle child inherited from my wife’s side and I and my oldest have a form of dementia so you are not alone.


Some “symptoms” of ADHD and autism overlap. When ya’ll get your diagnoses back don’t see them as hard facts. You’ll have to move around in them awhile, so to speak, to see how they fit. I have known some people to formally test negative for a diagnosis, when that diagnosis seemed to fit them perfectly. And other people carry around empty diagnoses that they never “use”. You’ll just have to see.


I've listened to AutismLive where Dr Doreen gives her take on the diagnosis. She makes a quick explanation of how it works in a linear way.

This is how you with "treatment" can move on the spectrum.
Classic autism Level 3 -2 -> Level 1 HFA/ Asperger -> fading over to ADHD.

A lot of these so called recovered kids, the ones that no longer qualify for an autism diagnosis, will typically have some attention problems. It's just very interesting to hear all this information from qualified people.

I also came across some information on Asperger in adulthood, research done in Gothenburg. I was listening to a documentary on autism where they explained Asperger was not officially used before 1994. Research done on these people diagnosed with Asperger back then - who are now in their 30's, a large proportion, like 20-30% no longer qualified for the diagnosis in adulthood.

I really wonder what happened there. Adapting can be that good that you actually can't be figured out despite testing on all levels?? And what would be the reason in acting in that situation?


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Din Aspie poäng: 102 av 200
Din neurotypiska (icke-autistiska) poäng: 108 av 200
Du verkar ha både Aspie och neurotypiska drag


Jon81
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18 Nov 2020, 4:12 pm

jimmy m wrote:
One of our member Jason Lu, wrote a book titled "Eikona Bridge". He is autistic and has a son and daughter who also are autistic. He describes in his book a very unique way he helped to teach them.


I respect his ideas completely. It's very clear pictures are important to use. Kristine Barnett, mother of Jacob Barnett, seem to have been doing the very same thing as Jason Lu, apart from the reading and pictures.

My issue with Jasons idea is that my kids are not especially interested in reading. His kids seem to have hypermedia and a lot of other talents. I've been trying to use words for his favorite things - but no real way of teaching them how to read. The youngest boy is watching the letters and numbers from time to time. Oldest one is not interested at all.


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Din Aspie poäng: 102 av 200
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Du verkar ha både Aspie och neurotypiska drag


Jon81
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18 Nov 2020, 4:21 pm

debianator wrote:
My son is ASD, I’m either ASD or ADHD or ASD (going through testing now), my middle child is ODD (undiagnosed) but symptoms, my oldest is testing for ADHD.

I truly believe my son and middle child inherited from my wife’s side and I and my oldest have a form of dementia so you are not alone.


The dementia is my issue as well and I'm also being tested, in January 2021. Suspect ADD with some autism traits. I believe these kind of issues are more common than we think. How is your ASD-son functioning and what's your age?


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Din Aspie poäng: 102 av 200
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Du verkar ha både Aspie och neurotypiska drag


Jon81
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18 Nov 2020, 4:27 pm

Juliette wrote:
I come from a family where my father was on the spectrum, as was his father(they did amazing things in their lives). I wound up with 4 brothers and a sister on the spectrum. I agree with your thoughts that autism appears to be genetic, rather than caused by environmental factors or immunisations.

You have such a good attitude and that can only help your children to go on to be and do all that they were ever meant to become/achieve. Acceptance and support makes a massive difference. Raising a child on the spectrum isn’t easy, that’s for sure, but I love seeing what can be an amazing outcome in adulthood, compared to the struggles and trauma parents can experience when their children are younger. All an autistic child really wants is to feel safe and secure and to know they can depend on those in control of their environment/s as life essentially “happens” to a child who is very young and on the spectrum, hence the fear and behavioural issues that can develop, and require managing. Life can be very frightening to a young autistic child who needs consistency in all areas from adult responding to routine.


I'm going to assume your father is/was not diagnosed, and certainly not his father for that matter. How would you describe your father? Are you NT yourself while all your siblings is on the spectrum? Childhood autism?


_________________
Din Aspie poäng: 102 av 200
Din neurotypiska (icke-autistiska) poäng: 108 av 200
Du verkar ha både Aspie och neurotypiska drag