autism

crafting Thank you. I totally agree, but my DS and his wife must see the need to take the next step themselves. I worked in schools for a long time and have seen the improvement a good diagnosis and a thing upon it can make. My DGD is ruling the roost a bit at the moment. What with her hormones in disarray (puberty) , the change to a new school and ADHD life is a little difficult in their family.

Schools need to help all children including ones with special needs. BBevan your DS and family are naturally overwhelmed. Ignorance (and I don't mean that in any derogatory way) of a situation frightens people. The more knowledge you acquire about things the easier it is to gain an understanding and seek the right help. When I was told years ago that my DH needed a triple heart bypass I had a complete panic attack. He was going to die, it was really serious and I was totally lost. Over the next few weeks I started reading more and more about his condition, the possible outcomes, what was involved. With the increased knowledge my panic subsided (don't get me wrong I was still afraid but I had found he had a good chance of surviving which he did and is still with me thank God). What I am trying to say is that your DS and family need to research, find out all they can. Get information and help from organisations, others with similar experiences and the school. They will need the school to know to help the school to be aware of the problems your DGD is experiencing and help all they can. I believe things will get better. As children grow up they develop ways of dealing with their problems and cope and understand better.
There are many of us on GN with children and grandchildren with all sorts of special needs. You can always come on here and get help. You would be amazed at how many people on this one forum have been in your situation and will do all they can to help and support you.

Trouble is watermeadow we live 200 miles away ☹️

BBbevan I don’t know the author, I read it several years ago. May be called just “Different for Girls”.
I tried to help by giving GD a neutral safe place where she knew she could always come when she or her parents needed a break. The meltdowns are just as upsetting for the poor child as for the rest of the family. GD would run off into the night and come to me for quiet gentle cuddles.

I had a long conversation with my DS last evening. They are rather overwhelmed by it all. But they seem reluctant to seek help outside the family and from the school in particular. This is strange as the school has been quick to help with GD's problems.
We don't really know what to do next to support them and GD is being very difficult at the moment

Thank you so much Crafting your reply is much appreciated. I have just ordered The Reason I Jump and I believe there is another book by the same author.
It is all very new to us at the moment and coming soon after my husband’s death, very raw.
Many thanks.?

I personally think it is a good idea to tell family of a diagnosis. Our DGC is on the spectrum and we would have been more understanding if we had known the reason for some of the things that went on. We would have been kinder and more help. Our DGC is maturing and better able to understand the problems having a diagnosis helps.
If anyone is looking for a book which explains why some autistic children react as they do I would recommend a book called The reason I jump by Naoki Higashida. Written by an autistic person I found it very good.
The family will need lots of support but don't give up helping and trying to understand.

watermeadow Do you have the name of the author of the book you mention ? I have looked for it on Amazon and the only thing that comes up with that title is a book by Jo Brand the blurb says it is about sex and chips so I think it cannot be the one.

One of my granddaughters has autism. It’s different for girls (title of a good book) and she wasn’t diagnosed until she was 11. Diagnosis means school has to provide support, Harrigran.
Her childhood was miserable, misunderstood, badly handled by school, filled with anxiety and fury. Same for her parents and sibling.
She’s nearly grown up now, doing better than we could ever have hoped and much happier but she will never be “normal”

My GD has just been diagnosed with ADHD. She has just transferred to secondary school and was having difficulties. She is a very intelligent child but has always been 'quirky' Her parents' words, I have always felt she was on the autistic spectrum. Her parents have taken the news badly and have slightly fallen apart. We have offered unconditional support both to them and our GD. Any suggestions as to what more we can do. We live 5 hours drive from them so we think they think we cant't be supportive

My eldest gs was diagnosed with Aspergers soon after starting primary school. Managed those years with help from TA. However, secondary school was a disaster almost from day 1, even though the school had been selected carefully on the basis that it had a good SENCO department. Before the end of year 7, he was being told he could only come into school later, after the other pupils came in, and had to leave earlier and whilst there had his lessons by himself. Result, an 11-year old with severe depresssion. His parents managed to get him transferred to a special school for autistic children. As none of these are any more under the state system, the cost to the local educational authority was enourmous. They tried to oppose it, but his parents fought the system and got him in. He attended there as a weekly boarding pupil, (too far to come home every night), for four years, came out with a pretty good handful of high level GCSE's, and the knowledge on managing his own symptoms. Went on local 6th form college and is well on the way to some excellent A level results. Probably will go on to Uni. The cost of those four years was well spent and in the long run - he will go on to become a normal citizen, with job paying taxes, etc, a lot less than if he had been unemployable and needing care for the rest of his life.

Harrigran, why the sharp reply? It was a reasonable question.

If the condition is not obvious why the need to have the child labelled and if you tell people it is because you want the child to be treated differently.

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.

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!

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.

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.

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.

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.

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 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.

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!

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.

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.

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.