autism

I have just been catching up on the newer posts on here and am, once again, thrilled with the way you are all so willing to share your own experiences and can understand those of you who think autism is being over diagnosed. We too have been staggered by the number of people we are meeting in so many different places - eg shops, the library, neighbours etc. who have at least one child with ASD.
I truly believe that this is happening simply because it is now known what to call it. For years children were so often just labelled as widely as 'badly behaved' to ;having a mental illness' or even 'bad parenting'. This still happens but as so many of you have said - the earlier the diagnosis the more chance of helping the child to a better life.
I enjoyed Elrel's post about her boy not wanting to wear clothes as our youngest GS just loves to strip off and run around. Not so bad in our Aussie weather but one day he took off over the fence and up the road with his Mum chasing him before any cars came along. We have to watch him all the time as he is so quick.
All your families are so lucky to have your support so let's have a cuppa to toast each other with.

I have just been catching up on the newer posts on here and am, once again, thrilled with the way you are all so willing to share your own experiences and can understand those of you who think autism is being over diagnosed. We too have been staggered by the number of people we are meeting in so many different places - eg shops, the library, neighbours etc. who have at least one child with ASD. I truly believe that this is happening simply because it is now known what to call it. For years children were so often just labelled as widely as 'badly behaved' to ;having a mental illness' or even 'bad parenting'. This still happens but as so many of you have said - the earlier the diagnosis the more chance of helping the child to a better life. I enjoyed Elrel's post about her boy not wanting to wear clothes as our youngest GS just loves to strip off and run around. Not so bad in our Aussie weather but one day he took off over the fence and up the road with his Mum chasing him before any cars came along. We have to watch him all the time as he is so quick. All your families are so lucky to have your support so let's have a cuppa to toast each other with.

f77ms - I'd say there are some strong OCD tendencies yes, but both dcs show very clear autistic traits as well. My understanding is that they are often comorbid, just like ADHD is. I think because autism so frequently goes hand in hand with other things, it can be difficult to know which behaviours stem from which difficulty, which can sometimes make it troublesome to know how to prevent it. Trial and error is done a lot in my house. If it works, great. If not, back to the drawing board. And sometimes things that work for awhile just suddenly stop working, so we have to rethink it again.

I have to say that while it can be exhausting (and sometimes maddening!), I am still extremely thankful that they are generally otherwise healthy (or that things like eczema and asthma are mostly controlled by meds) and that it's not something life limiting. I can make adjustments to how we do things, adapt what we do and where we go as needed to some extent, do my best to prepare them for being an independent adult (and hope they will one day be independent as an adult, as we don't yet know this). It's part of who they are.

For me, the frustrations are the dreadful inadequacy of the support available and the difficulty steering through the deliberate roadblocks placed for accessing education. I'm fairly proactive and willing to fight for their rights, but some parents are just ground down, exhausted, or simply don't know where to begin. It's appallingly difficult to sort it in the best interest of the children involved. Nothing is done without a fight from the LA.

There is so much support and so many helpful suggestions on this thread that I shall show it to a friend who isn't on Gransnet. She tries as much as she can to help her daughter who is exhausted by the demands of her beautiful, happy son's behaviour. He's nine, doesn't like wearing clothes, is very active and sleeps very little.

Heavenknows , it sounds more like OCD . What you describe sounds exactly like my son who is in his 30`s and has severe OCD and all the symptoms you mentioned .

Having a diagnosis doesn`t often get any of the so called support everyone talks about . I just think in general Autism is being over diagnosed , it seems any child who is `different `or difficult to manage gets labelled with Autism. My grandson aged 5 is one , I truly believe that it was his very stressful early years , his Mum had a breakdown which lasted a couple of years and he was kept away from the rest of the family , he must have been so traumatised by what he went through.
I expect other posters will lay into me for holding these views but it seems every other person has at least one child in the family diagnosed with Autism or Aspergers .

Iam pity your DGS and my DS can't get together, they sound very similar

Although GS1 has managed to make a lot of friends at school he frequently gets into trouble when other children go out of their way to wind him up. When we explain to him that this is what is happening he just says "But why would they do that?" And, of course, he is very literal. Spending a lot of his preschool life with me has meant that he has developed a pretty good grasp od sarcasm, but I still find that jokes misfire because he has taken an offhand remark as the literal truth.

My ASD grandson is now in his early 20's. He was diagnosed mid primary school, his mum (very understandably) had been reluctant to get a camhs referral because she felt her alternative lifestyle and separation from his dad would be 'blamed' for his difficulties at school. The diagnosis was hugely helpful, it relieved the feelings of guilt she and his father had and ensured her little boy had a statement to support his progress to A level. He's very bright academically and struggles socially.
As he's got older, he's read a lot about ASD and he feels this has helped him understand his disability and begin to live with it. He's socially isolated but has a good on line social life. He's a talented writer and I so wish he'd join a creative writing group locally. That's a daft wish though isn't it, for someone who struggles socially.
It's an invisible disability and I wish I had a magic want to make it go away. He is a lovely, gentle, intelligent and thoughtful young man. He's currently on a zero hours contract, waiting on tables at a local hotel. I'm delighted that he's had this work for 3 months now, all credit to him. But, this is a lad with good GCSE and A level results, excellent IT skills - he'd have made a brilliant librarian but all the libraries are closing.
Good wishes to everyone with children/adults in their families who live with invisible disabilities, whether physical or otherwise.

researchbriefings.parliament.uk/ResearchBriefing/Summary/CBP-7172

www.autism.org.uk/get-involved/world-autism-awareness-week/schools-autism-awareness-week.aspx

The National Autistic Society is running the first schools awareness campaign this year.
They are also very aware that when our grand/children leave school they will have just as many problems. They have been highlighting the problem in parliament all last year.

Hopefully there will be more support available.

I like that jane it's precisely why we paid for DS to see a psychologist. He now has a mentor through the job centre who is endeavouring to find him employment he can cope with, he sees him weekly and he has told us of various measures that may help. The job centre themselves are being more helpful. None of this would be possible without a diagnosis.

A person with ASD once said to me diagnosis isn't a label but a signpost to appropriate support! Much more useful way of looking at it.

Some parents are afraid of a diagnosis, but the sooner you know, the better,and it's unfair on the child not to.The misery of an autistic child at a 'normal' school must be awful.There have never been enough schools or autism units built, or enough cash put into mental health, and it's a crying shame.However, I see that in our area a brand new school has been built , so at last the children who need it can be in the right place.My own DGS attends a marvellous school already for age 8-18 and he is so lucky to be there, it's just the sort of school that he needs.

Because it is a disability that cannot be seen it gets little sympathy from the general public and as someone else said their mindset and behaviour make them vulnerable and open to abuse. I do not wish to compare disabilities but my cousins grandchildren get far more sympathy when out and about because they suffer from cerebal palsy.It is an obvious disability.

Exactly Crafting it's a lifetime of worry.

I know there are a lot of ASD children out there but it is good to hear others stories. Whoever said look at the behaviour that's causing the problem obviously knows nothing about the range of problems that an autistic child can have. I love our GC dearly but the future holds so much worry. Fear of loneliness, anger, hurt and pain. I know everyone can suffer from these things but ASD children need all the help they can get as does any child suffering from anykind of mental or physical disability.

I don't normally post about family things, but agree that this needs talking about.
My 10 year old GS has high-functioning autism. He is fully bi-lingual and lives in Spain. I worked as a SENCO for many years and I diagnosed it (clearly the health and education systems were not going to) and then had the difficult task of telling his parents. They responded wonderfully and sought help everywhere they could. There is no help at all available through the school system, but they have been supported by the Asperger's Association and have spent an enormous amount of time helping his class teachers to understand his needs. He functions fairly well in the Spanish system as it is mostly about rote learning and listen, memorise, regurgitate. In the holidays he is clearly exhausted and regresses.
It is hard on so many levels. We wondered why he has an obsession with talking about hair, beards and moustaches, until we realised it was all to do with not being able to interpret faces. They came to visit us last summer and whilst his sister flourished in the countryside, he clearly suffered from sensory overload and needed a lot of quiet time on his own. These challenges emerge all the time and he is one of the ones with far fewer issues than many others.
It is so hard for everyone and living 2000km away makes it very difficult for us to support them as we would wish.
Oh yes and the "what is his special talent" bit, makes me want to scream.

No worries, smarti.

Even with my 6yo technically diagnosed as "high functioning" autism, he also has learning difficulties, including most likely dyslexia (which is being looked into), memory problems, and sensory processing problems. High functioning makes it sound like it's just minor but it's not. It affects him all day every day. The main difference between "high functioning autism/aspergers" and "autism" is whether or not there's been a speech and language problem.

My days are filled with carer duties, homeschooling, meds (they both have asthma and eczema), and dealing with the ongoing battles with school for one and the LA for the other to get an EHCP in place. It's never ending - as soon as one battle is done, another one seems to start. Win the battle for provision? Then it's a battle to get it implemented. Any changes to needs? Right back to square one again.

And don't get me started on the comments about them having other "gifts" due to their disability. My older boy is exceptionally good with numbers - cue the misguided "Oh, he's just like Rainman!" comments. At that point, I have to walk away, as I don't trust myself to respond in a civilised manner in front of the dcs.

I'm so sorry but I put the wrong name on about the comment I wanted to reply to - it was Tricia2 I believe.
Hope this doesn't upset the whole conversation.

I am amazed but delighted with all the comments my question let to. Thank you to all of you. I should perhaps add her that I am actually an Australian and just saw about this site in the back of a novel I just read. Thought I'd have a look and here I am - having a conversation with you lovely folk on the other side of the world!! I have to comment on the post from Heavenknows and understand where she's coming from as I too worked in a school with many disabled children and had no personal understanding of autism until we were confronted by it in our own family. Please believe me that it is a very real and at last better understood disability. Our government actually classes it as a 'catastrophic disability' now and families can access some government funding to help with the high costs of good therapy. Please do not dismiss this so harshly. We have an opportunity to help our boys become good, fulfilled adults or leave them to suffer and then live on government pensions...I know what we prefer.

Jane10 - you're right, I think attitudes and views have changed a lot, it's been a long time. Hopefully the amount of support and provision available too, which used to be very thin on the ground.

l recognise so many of the characteristics other posters on here are describing. Not to the extent your relatives seem to have, but many of them are apparent in OH.

Don't anyone dare come up with the comment that "ASD people often have unusual gifts in other areas" as if it compensated for the likelihood of being rather lonely in life and all the other problems. (I am quite sure you carers won't) but I have heard it.

I have said this on similar threads, but it seems to me there is a often a general reluctance to talk about the great difficulties and stresses that can be caused to carers of people who's general behaviour can be very wearing.
Carers seem to feel they have to be brave and go on trying to do their best and feel disloyal to mention any stresses.

Look after yourselves.

Would be good if it was a behaviour and a problem, wouldn't it?
I wouldn't be able to count the number of problems.

just look at the behaviour that's causing the problem and try to correct it, like any other child
They are not like any other child though.

Agree, Jane10. Who on earth would want to make up these problems with your child or grandchild?
Look at how many do not want to recognise the disorder. Even the children say there is a sense of relief having a diagnosis.