[Misc] Autism - Neurodiversity

[Uh_huh_him]

I'm glad things are looking up.

I hope you don't give yourself a hard time about this. This was the way it was back then. You did what you thought was best and followed the advice of the time.

So good you have a good enough relationship with him to talk about it and work out what he needs. That's important.

I hope he finds himself and continues to thrive.

Cheers.

Of course I give myself a hard time about it. How could I not.
But I can't change any of that, so don't dwell on it.

Now that I've acknowledged what was wrong, I have to stop myself from doing exactly the same thing, by telling him what to think from my new perspective!
It's hard, the Dad thing is difficult to overcome.

He knows himself better than I do.
It will take longer than I want, for him to come to terms with the stuff he needs to, but my input won't speed that up.

 

[Triggaaar]

Edit: The causes and curing/prevention of autism is another interesting discussion. With such a huge spectrum of characteristics, it is hard to speak for the whole community but you are right there are many people who don't believe in curing or preventing autism because of the benefits that those differently wired brains make to our society. Do we really want to deprive ourselves of brilliant minds such as Alan Turing? Once you start looking into the personalities of brilliant people throughout history you see a pattern of social and sensory challenges suggesting undiagnosed autism surrounding some of the most incredible minds throughout history.

If you offered me a cure for my kids (or indeed myself) I would, without hesitation refuse. My 18 year old would agree. Having said that if we could get rid of the anxiety that co-occurs with it we would be happy.

It's great that your family are doing well, but a lot of people are more negatively affected by their autism. It would certainly be good to learn more about what causes it, and possibly what causes the different levels/types of autism.

 

[Uh_huh_him]

It's great that your family are doing well, but a lot of people are more negatively affected by their autism. It would certainly be good to learn more about what causes it, and possibly what causes the different levels/types of autism.

I agree with what you're saying, research into the causes autism is useful.
However the disparity in funding for "curing" the problem and supporting the condition are stark.

Ultimately, the cynic in me feels that the pharmaceutical industry know that a "cure" for Autism is a potential gold mine.
I know I would have paid anything to rid my son his "affliction".
We seriously investigated all manner of miracle cures, in the first couple of years after diagnosis.

 

[Sheebo]

I am fully supportive of society’s improvement on various learning difficulties and ‘different’ people I really am (except when parents use it as an excuse for shots parenting which I’ve seen and heard of many times) But I do have some questions on autism I want to ask. I’m not sure if this is the place as I’m worried people will jump on them the wrong way which happened before when I innocently said a comment - OP will you be happy to answer them for what they are pls as I’m intrigued…?

 

[Neville's Breakfast]

It's great that your family are doing well, but a lot of people are more negatively affected by their autism. It would certainly be good to learn more about what causes it, and possibly what causes the different levels/types of autism.

Perhaps that’s not the right way of looking at it. Different pathways of brain development do not necessarily need a cause. So they don’t need a cure. My brain will be as different from yours as mine/yours is to a person with an autism diagnosis. We are all on a spectrum. Surely the important thing is the level of support someone needs ?

 

[Rambo]

My son is 3 and a half. 6 months after he was born he presented with infantile spasms, a rare form of epilepsy that causes many issues one of them being autism.

He is a happy little soul most of the time but suffers from anxiety and sensory issues. He is non verbal at the moment but we cling on to every bit of hope that he will speak. He struggles to communicate and get frustrated resulting in meltdowns. His sleep was a always good but recently has now started waking up at all times during the night.

We couldn’t find any drugs to stop his seizures but recently have started a keto diet that has stopped them for 2 months now. This gives us further hope.

Trying to get the right support is a constant battle. Just to get him in the SEND school that is near us is already proving very difficult.

He needs 24hr supervision as his perception of danger is non existent.

Without my wife I don’t know how I would cope. She is amazing, most nights up until 12 cooking his special food for the next day.

Every day is a struggle, but we just keep going, and what else can you do?

Respect to all those going through the same thing. It makes us better people we just don’t realise it.

 

[BadFish]

It's great that your family are doing well, but a lot of people are more negatively affected by their autism. It would certainly be good to learn more about what causes it, and possibly what causes the different levels/types of autism.

The current thinking is certainly around genetics. Maby environmental factors have been investigated but to no avail.

It is more about a difference in the way our brains work. Although autistic people get annoyed with the 'we're all on the spectrum trope' I think that this is closer to the answer than splitting people into two distinct spectrums, autistic and no autistic.

I don't mean to undermine anyone's experiences and I fully acknowledge that everyone's experiences are different and usually difficult. I apologise to anyone if I am being insensitive. This journey has nearly broken me on so many occasions but the fact my kids are who they are and they are wonderful. Why would I want to change that?

The problem with the medical model is that in order to get on in a strange, confusing and hostile world it asks autistic people to change the very essence of who they are. The pressure of changing themselves and learning how to appear acceptable to the neurotypical world is exhausting. This is not healthy and causes many mental health issues (the stats around this are terrifying). If we can make the world a little more accepting and empathetic it serves everyone better.

 

[BadFish]

My son is 3 and a half. 6 months after he was born he presented with infantile spasms, a rare form of epilepsy that causes many issues one of them being autism.

He is a happy little soul most of the time but suffers from anxiety and sensory issues. He is non verbal at the moment but we cling on to every bit of hope that he will speak. He struggles to communicate and get frustrated resulting in meltdowns. His sleep was a always good but recently has now started waking up at all times during the night.

We couldn’t find any drugs to stop his seizures but recently have started a keto diet that has stopped them for 2 months now. This gives us further hope.

Trying to get the right support is a constant battle. Just to get him in the SEND school that is near us is already proving very difficult.

He needs 24hr supervision as his perception of danger is non existent.

Without my wife I don’t know how I would cope. She is amazing, most nights up until 12 cooking his special food for the next day.

Every day is a struggle, but we just keep going, and what else can you do?

Respect to all those going through the same thing. It makes us better people we just don’t realise it.

Full respect to you both. ,

Nothing else you can do but keep on keeping on. Enjoy the happy times and the love.

 

[Neville's Breakfast]

The current thinking is certainly around genetics. Maby environmental factors have been investigated but to no avail.

It is more about a difference in the way our brains work. Although autistic people get annoyed with the 'we're all on the spectrum trope' I think that this is closer to the answer than splitting people into two distinct spectrums, autistic and no autistic.

I don't mean to undermine anyone's experiences and I fully acknowledge that everyone's experiences are different and usually difficult. I apologise to anyone if I am being insensitive. This journey has nearly broken me on so many occasions but the fact my kids are who they are and they are wonderful. Why would I want to change that?

The problem with the medical model is that in order to get on in a strange, confusing and hostile world it asks autistic people to change the very essence of who they are. The pressure of changing themselves and learning how to appear acceptable to the neurotypical world is exhausting. This is not healthy and causes many mental health issues (the stats around this are terrifying). If we can make the world a little more accepting and empathetic it serves everyone better.

From my observation genetics play a large part but then they do in lots of areas of physical and and brain development. Others are better placed to analyze the data but family history can be the key. There is lots of research published by Simon Baron Cohen (cousin of Sacha) who has been a leading authority in this area for a generation. You will know so I’m directing this at the thread as much as at you.

 

[Brovion]

I have absolutely nothing to add to this thread but I just want to say what fantastic parents you all are. Seriously, you are all absolute superstars. It's quite humbling reading the experiences. Bringing up two non-autistic children (and now a grandson) is challenging enough, but to go through what you guys have gone / are going through ...... well I really don't know how you do it, I don't think I could have done it.

All the very best.

 

[Weststander]

Amazing thread. Thanks for this.

My 4 year old son is autistic, non-verbal (makes everything so, so much harder because he can't express himself and tell us what is bothering him). He is a very, very happy young boy, fascinated by vehicles, especially buses!

This is the biggest challenge I will face in my life time. It is incredibly difficult trying to parent a child with such complex needs, and with his total lack of sleep it really compounds everything. He often goes to sleep at 8 and is awake from between 1 and 4. Then wide completely wide awake from 6. It's a real challenge for me and his mother, we're only young.

Currently going through the process of trying to find him a suitable school. Obviously, no local schools have the qualifications to teach him and the school we applied for is full, council are suggesting he may need to go to a main stream school. They cannot meet he's needs. We will fight this.

Everyday is a real struggle, luckily I work, but my Mrs, she's is amazing. She is with him everyday, she manages his meltdowns. Not little meltdowns, you probably don't understand until you've been in a situation where you walk down the wrong road, or you put the wrong shoes on to go to work. The meltdowns are real. I love her so much, I don't know how she does it. Even the nursery he's at say they can't take him anymore hours, they don't have the staff apparently. Yet advertise all over Sussex they have places available. Funny that.

Love him so much. He's so clever, just in his own way. I just hope, one day he'll be able to call me dad.

Schools - you probably know about this already, but 10 years ago the key was getting a Statement of SEN's from from your education authority. With that you go can to special independent schools (local, day pupils) and be funded.

It's a legal fight each time to get the statement, there's a specialist firm of solicitors recommended by the schools (not ambulance chasers) . It can take a fair time, but at age 4, time is on your side.

Regarding schools, I know that Northease Manor had a great reputation but it may be moderate SEN's only? Also many anecdotal happy/success stories at Hill Park School down Foredown Drive.

I realise that you guys are on the case. Good luck.

 

[Neville's Breakfast]

Schools - you probably know about this already, but 10 years ago the key was getting a Statement of SEN's from from your education authority. With that you go can to special independent schools (local, day pupils) and be funded.

It's a legal fight each time to get the statement, there's a specialist firm of solicitors recommended by the schools (not ambulance chasers) . It can take a fair time, but at age 4, time is on your side.

Regarding schools, I know that Northease Manor had a great reputation but it may be moderate SEN's only? Also many anecdotal happy/success stories at Hill Park School down Foredown Drive.

I realise that you guys are on the case. Good luck.

Recent legislation is actually trying to move from private back to state provision because of the amount of money flowing out. At the moment it is a bit of a postcode lottery with LAs behaving very differently in different areas. Mainstream academy groups are now planning autism units and there is new state provision opening here in Merseyside so perhaps elsewhere as well.

Ambitious reform for children and young people with SEND

Green paper will consult on a stronger national system for children with special educational needs and disabilities (SEND), boosting parent confidence.

www.gov.uk

 

[rebel51]

With regards to all of this, I'm struggling with our 9 year old who has autism and probable adhd and 4 Yr old going for assessment for autism who has also speech and language problems. 9 year is having school refusal and it's such hard work dealing with it all. I have a late diagnosis of autism and adhd also which really affects my sensory world which has now stopped me going to amex(can't stand sitting amongst loads of people also where you cant move around), preferred standing back in the old days. Seems to have got worse as ive got older, I used drink before just to get away from myself and basically used masking to pretend I was someone different than who I really was. So early diagnosis is very useful for school years etc and the pressures of life which will occur more for someone who is autistic. Btw this is not a self pity message.

 

[Neville's Breakfast]

With regards to all of this, I'm struggling with our 9 year old who has autism and probable adhd and 4 Yr old going for assessment for autism who has also speech and language problems. 9 year is having school refusal and it's such hard work dealing with it all. I have a late diagnosis of autism and adhd also which really affects my sensory world which has now stopped me going to amex(can't stand sitting amongst loads of people also where you cant move around), preferred standing back in the old days. Seems to have got worse as ive got older, I used drink before just to get away from myself and basically used masking to pretend I was someone different than who I really was. So early diagnosis is very useful for school years etc and the pressures of life which will occur more for someone who is autistic. Btw this is not a self pity message.

Unfortunately you have to keep fighting for help. This is why many parents of SEN children become very embittered by the system. Consider supplementing the state therapy provision with private help. There is a national shortage of SLTs and OTs and even if you get seen it is often only to put you on a waiting list. A good private therapist will actually do more than just assess.

Find a speech therapist - ASLTIP

asltip.com

 

[KZNSeagull]

I made the comment in the other thread that help past 18 seems to fall off a cliff which is causing issues. My son is 23, high functioning, diagnosed at 3.5, was "not autistic enough" to get a SEN which is why we packed up and went to South Africa for 12 years as we could afford private education and other things over there which was great up until he got to high school age after which things didn't go so well.

Since we came back (he was aged 17), it has been a bit of a struggle, so much so that we had to get the mental health crisis team involved as he started messing about with electricity sockets. This was the only time that we felt that he was being listened to. Once he was over that episode though, he seems to get ignored again. The crisis team are just that, he does not have a social worker or a care coordinator and every route we have taken to get him one leads to dead ends.

He was using his PIP to go to special needs Stables 3 times a week where he would ride and care for the horses, which he loves. That closed down suddenly just before Christmas as "it is better financially for us to educate ex-prisoners than it is to offer a service for adults with special needs". So we are now trying to find him other things to do - he has enrolled at a normal Stables where he has a lesson once a week and another session where he is preparing to start the BHS Horse Care Certificates which is something for him to aim for. He is also registered with Durham Works which helps people with special needs find work but they have assessed that his social skills are not good enough yet, so we have also enrolled with another organisation which will assign him a job coach who will help him improve his social skills and teach him to become more independent. He is also going to go to a charity once a week where they create things for festivals and other events which we hope he will enjoy.

We find that the "trouble" with some charities and organisations is they lump autism in with other disabilities (like Cerebral Palsy, Downs etc) and do not push our son enough, or at all. He has learnt and achieved more in his 4 private horse lessons than he did in 3 years at special needs stables for example so perhaps that closing down was a blessing in disguise. We hope that the organisations he is now with will push and challenge him and he eventually gets nearer to getting a job which is his ultimate aim. He has told us that all he wants is to have a purpose in life. He is a very capable, mild mannered and pleasant chap who just wants someone, somewhere to stop treating him as disabled and give him a chance. Hopefully that is getting a bit closer.

 

[Uh_huh_him]

I am fully supportive of society’s improvement on various learning difficulties and ‘different’ people I really am (except when parents use it as an excuse for shots parenting which I’ve seen and heard of many times) But I do have some questions on autism I want to ask. I’m not sure if this is the place as I’m worried people will jump on them the wrong way which happened before when I innocently said a comment - OP will you be happy to answer them for what they are pls as I’m intrigued…?

I'm sure he will.

A lot of parents will get very defensive about their autistic kids' behaviour.
I've done it myself, several times.
As autism is a spectrum disorder, it is often not easy to establish whether the child has challenges or not.
My son presents as neuro-typical, so was often considered to be a spoilt brat, or me a bad parent when he was having a meltdown in public.

To a certain extent, many of the triggers for an autistic meltdown are similar to spoilt brat behaviour.
However the challenge is, that an autistic meltdown, isn't something which can be managed in the same way as a neuro-typical child.
The sensory overload that occurs to them, is all consuming, it isn't something you can just snap them out of or prevent by being authorative with them.

It took me years to be able to accept that I had to let it just run it's course.
In reality the meltdown had been building for several hours and I was not aware of it.
Charlie became better at being able to tell me that his anxiety was becoming an issue, before the meltdown was triggered.
That was after several years in a special school, where professionals had been working with him and helping him understand his condition.

I agree that Autism can be used as an excuse for poor behaviour/parenting, but I'd be careful about rushing to judgement.

 

[Triggaaar]

I don't mean to undermine anyone's experiences and I fully acknowledge that everyone's experiences are different and usually difficult. I apologise to anyone if I am being insensitive.

I really doubt you have any need to apologise to anyone.

This journey has nearly broken me on so many occasions but the fact my kids are who they are and they are wonderful. Why would I want to change that?

Whether one would wish for a different outcome might depend on their hopes for their child's future, and how affected that could be by any disability. I would certainly wish disability hadn't been part of our family.

The problem with the medical model is that in order to get on in a strange, confusing and hostile world it asks autistic people to change the very essence of who they are.

Is that definitely correct? I read that the social model claims that, but while a medical model might like to help a disabled person cope with the world that's already around them, I'm not sure the model is against the idea of also changing environments to better suit people with different needs?

The pressure of changing themselves and learning how to appear acceptable to the neurotypical world is exhausting. This is not healthy and causes many mental health issues (the stats around this are terrifying). If we can make the world a little more accepting and empathetic it serves everyone better.

Indeed.

 

[Triggaaar]

Of course I give myself a hard time about it. How could I not.

A lot of parents don't give as much time to their children as perhaps they should, because they are consumed with their own lives.

If the difficulties with your son were because you didn't give him enough time and effort (and that does happen, life can be difficult), then I can understand you feeling guilty. But I get the impression that wasn't the case at all. You were simply a dad trying to do what you thought was best for your son. That you weren't born a natural autism expert is hardly something you can blame yourself for. All parents have to learn as they go, and that's even more challenging for parents of children with disabilities.

So I don't think you're right to give yourself a hard time.

 

[Triggaaar]

Perhaps that’s not the right way of looking at it. Different pathways of brain development do not necessarily need a cause. So they don’t need a cure. My brain will be as different from yours as mine/yours is to a person with an autism diagnosis. We are all on a spectrum. Surely the important thing is the level of support someone needs ?

I think the level of support someone needs is a separate point from whether or not anyone could benefit from a 'cure'. It's not an either/or choice. We should support people with autism. But that doesn't mean we should make no attempt to learn what might cause it. I disagree with the point that we're all on the spectrum and our brains are all equally different. Some people's autism has a much more negative impact on their lives that others. Some people with autism would not be without it (exampled in this thread), but others end their lives because of it (or because society can't meet their needs).

When someone's autism (mixed with society) completely ruins that person's life, I don't see why we would have no interest in researching whether or not it's possible to prevent people being so negatively affected by autism in the future. Of course it might not be possible to find anything useful, but I'd expect us to research it.

 

[BadFish]

I am fully supportive of society’s improvement on various learning difficulties and ‘different’ people I really am (except when parents use it as an excuse for shots parenting which I’ve seen and heard of many times) But I do have some questions on autism I want to ask. I’m not sure if this is the place as I’m worried people will jump on them the wrong way which happened before when I innocently said a comment - OP will you be happy to answer them for what they are pls as I’m intrigued…?

I will do my best to answer them and certainly won't assume anything other than genuine interest. If you prefer you and PM me too