autism

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.

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.

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.

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.

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

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.

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.

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

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 .

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.

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.

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.

I work in a university and the number of students on the autistic spectrum disorder is considerable and rising as the condition is more understood in this country. One important thing to realise is that although there are common traits and differing levels of autism, the personalities and personal experiences of the people I work with are very different.

I have been learning how to work with these students by researching the condition and by taking the time to talk to them about their individual experiences and needs. It's demanding with some students, but hugely rewarding to see them blossom and progress with their degrees and with adjusting to life (in varying degrees) to the communal university life.

I think that families need to learn about the condition but don't blanket apply everything they read. Talk to their children about what helps them, what scares them and so on. Join support groups and engage with the professionals who work with their children at school. And love every aspect of them...nothing like a mother's love and a grandmother's love.

Thanks for that jevive73.It is good to know that higher education and support is available.
Many of the children with this "disorder" are cheerful ,optimistic and very lovable. It is Society which is the problem and the desire for conformity that is required. If only these children could develop in their own way they would be happier, and society would be richer .I find my grandson's honesty and straightforward approach to life very refreshing.
Thanks also to the poster who described the difference between high functioning and ordinary autism. I did not know that it was concerned with delayed speech .My daughter has always worried about this and although DGS reached all his targets for Year 3 he is not considered high functioning. He has now developed signs of ADHD which is somewhat concerning.

The term high functioning autism is highly contentious! Its more useful to regard asd as a spectrum of cognitive ability. The specific difficulties of asd thus manifest differently depending on the individuals cognitive ability. Speech development can be a bit of a red herring. I have met people who were non verbal then suddenly began to speak in fully developed language and went on to higher education and beyond. Others' language didn't develop very well as they had a learning disability. Definitions are changing. Its not a static field as more is being found out each year. The interrelationship between asd, adhd, dyslexia, dyspraxia etc may lead to a more general category of developmental disability rather than cram everyone into an autism category. Who knows? We're learning all the time.

heavenknows I agree totally with your last posting, the fight for parents to secure the right education is just awful.Because there are not nearly enough places available, all sorts of obstacles are placed in the way of unwary parents it is an exhausting and upsetting series of battles, one after another.
If you are not vocal enough, or have the time and energy to do it, then you give up.You would think, and I'm sure that most people do think, that if you have an autistic child, the authorities will guide you to the right educational place for him/her.Not so!

I empathise with those who struggle with the increase in diagnose of ASD or ADHD, despite my earlier post in which I quoted my grandson who feels it isn't being over diagnosed, it's simply being properly recognised.

One of the things I found difficult when working in camhs was that standard tests for ASD/ADHD were helpful but were often times used without taking a full account of pre natal or early years experiences. Parenting children who are not as easy to care for as their siblings or peer group puts a lot of stress on parents but many of the children I saw had also experienced a series of broken attachments, inconsistent, cold care or living within families where high expressed emotion or resort to violence was a feature. If you are a more vulnerable child, you'll find that kind of living experience even more difficult than your more resilient peer.
Just saying.

My autistic granddaughter was not diagnosed until she was 12. Autism is very often different in girls and professionals are only just beginning to learn that what they think of as typical autism is not applicable to girls.
My granddaughter is 17 and attended mainstream schools where she was given no help whatsoever. Her mother's concerns were ignored and her daughter left sitting in silence at the back of the class, learning nothing, then exploding with her pent-up anger at home. She was, quite simply, hell to live with and her misery has affected every day for the rest of her family.
Home education is not an option for parents who must both work full-time and schools will evade responsibility to provide support because it costs them extra.

I have mixed feelings about home education but don't want to cause offence to those who find it works for them.
My own view is children benefit from school but apricot, I so agree about the way in which many children are left to get on with it, without any proper support. Dreadful, especially as we know so much more about the various ways in which developmental disorders or emotional / psychiatric difficulties impact on children, their wider family and indeed their teachers and peer groups. Of course, it would cost us financially but I feel proper provision would be cost effective.
You'r right about girls as well.

Way back with the 1944 education act the children who were obviously failing at school were quite rigidly categorised according to disability.

The category which would probably have included ADHD and ASD behaviour which did not appear as Educational Subnormality were probably put in the category then delightfully referred to as "Maladjusted".

Things have improved since then.

Nelliemoser Things have got better. In the past many children with autism, or other social & learning disabilities, would probably have been placed in institutions and not offered any education/therapy etc.

I am particularly mindful of this today since I visited the Museum of the Mind at the Bethlem Hospital museumofthemind.org.uk and you see what a long journey it has been /still is for society to care for, support, manage and understand the mind/brain and its functions/ malfunctions/ illnesses.

I really do think that historically a great number of children and adults with ASD would have been thought to be 'mad' and spent a life in very inappropriate places.

I really think that it is fine to share emotional support and advice on how to pursue additional support via LAs and schools but each child with autism is different and what will help and meet their particular needs may be the opposite of what might help another child.

Yes everyone with autism is different. There is more to a person than their autism. Their other genetic potential and their life experience all contribute. However, the basics of structure, predictably, calm, and enlightened carers are useful for all.

My DGG has been diagnosed with autism (severe) and also Global Development Delay (severe) a few months ago, she has just turned 4. She has no communication skills. She is such a beautiful little girl and is obviously behind this terrible condition a very bright and intelligent little girl. You can tell she understands absolutely everything you say to her. We waited so long for this special person to come into our lives and need all the help I can get to build a relationship with her. She is very active, she climbs on everything she can and as I have severe mobility issues cannot at the moment give her parents a break by looking after her. I do not have any first hand experience of how to communicate with her so if anyone on this thread can advise I would be so grateful. What I do find frustrating is the way the general public respond when she is out and about. She hums and shakes her head constantly and continuously clenches and unclenches her fists which I am sure is done out of frustration. Some just look at her and laugh, some look at her parents as though they have done something wrong, and when she has her "meltdowns" people obviously think she is a very badly behaved little girl whose parents don't have any control over. My DD often apologises to them!

Good morning.
Does anyone find it helpful, or not, to tell people (extended family etc) about a diagnosis. My 6 year old grandson has just been diagnosed with high functioning autism and while it is not immediately obvious he can come across as slightly eccentric.
Our feeling is that if he is labelled then people will look for 'signs'
We are still a bit shell shocked and raw........he is a delightful little boy and I wouldn't change a hair on his head but can't bear the thought of him facing challenges.
Many thanks.