13 year old granddaughter autistic

Whilst that is true there are more and more children with very complex needs being placed in mainstream schools, what is tending to happen now is that those mainstream schools are creating 'special units' to provide for the needs of those children. I see very little benefit to this approach.

vintage1950

I suspect that the drive to include neurodivergent and other special needs children in mainstream schools came partly from considerations of funding. Education is mainstream schools is cheaper than in special schools or units.

Not all neurodivergent children need special education and can manage quite happily in main stream education.

In my family we have recognised 4 generations of neurodivergency. All have come through main stream schooling with few and manageable problems. Physical health problems have caused far more problems.

I am well aware that some neurodivergent children do need special help, but sweeping statements that assume that all neurally divergent children need help are far from the mark and do them no favours.

To help you understand a little, I recommend reading “The Subtle Spectrum” by Joanna Grace. It’s an easy read from the perspective of people who are autistic. Also, try thegirlwiththecurlyhair.co.uk/
The symptoms and experiences of girls are less well documented and tend to be subtly different from those experienced by boys.

Take him to see your G.P. He's exhibiting signs of Obsessive Compulsive Disorder, which won't go away without help. I speak from experience as my child suffered from OCD at the same age- paranoid about germs and contamination- washing until his hands were raw. He was treated with a combination of Cognitive Behavioural Therapy and medication. It's a symptom of deep anxiety and is quite complex for a parent to address without professional help.

As others have said this sounds like fairly typical teenage behaviour but, in addition, she must be so upset to have received this diagnosis and now believes herself to be different from all her friends. She will have her own ideas, maybe incorrect, of what autism is too. Presumably she’s not taking medication but is nevertheless wondering what the future holds. I hope her parents are being open with her and she’s involved in all the decisions about her life now. She needs to feel in control, maybe she’s creating havoc because she doesn’t and also can’t process what this label means. Unfortunately taking it out on siblings doesn’t sound unusual but they need to be safe. Also they are probably worried about their sister and themselves too which is affecting their behaviour. It sounds like a series of honest family chats is needed to address worries and set ground rules for continuing behaviour. Maybe with regard to current behaviour, stress that she’s the same girl she’s always been and bad behaviour has consequences. Some brilliant courses out there when you find them, but you will have to be prepared to find help and fight for it. A good place to start is the SEN team at their LEA who can answer a lot of questions about help that should (!) be there for them. One huge thing I learnt (and should have known) is that adults in the family need to take a moment to self-regulate before dealing with this behaviour, not always easy.

Daddima, my post should have read ASD...I have these moments!
It's lovely that your grandson is so accepting. It is one of the biggest fear my son had about my DGS. As it is, he is very popular, invited to most parties and even the parents find him acceptable. Kids often like the ASD child, the other parents don't always understand the behaviour so exclude.

icanhandthemback

My DIL asked to see the records the school held after her child was diagnosed by the NHS. The records stated that my DIL was determined her daughter had ADS and they were going to ignore the diagnosis whilst resisting an EHCP. My DIL removed her suicidal daughter from the school and home schooled. She is way ahead of her peers group in so many things and is winning gym competitions left, right and centre. At 11 years old she can discuss politics intelligently and give you the science behind airliners which bamboozles me.
Several of my uncles were ND. They were beaten into submission at school and were damaged for life. One of them was sent away to a boarding school. Despite being a wonderful musician, a fine engineer and artist, he self-medicated until his death because he didn’t want to risk being locked up again.

I had ( as I often do) to look up the initials, but Acquired Demyelinating Syndromes is a new one on me. Education, Health, and Care Plan was also unfamiliar, and I guessed that ND was neurodivergent.
Looking back at my childhood, my children’s, and my work in Early Years. I only came across any children with sensory issues in the last ten years. I certainly don’t remember any earlier than that. I know that obviously children who are classed as being ‘high functioning’ autistic are being diagnosed now, where previously they would have been classed as naughty or badly behaved, but now in my circle of friends there are five who have family members who are non verbal, with severe sensory issues.
In my work with families I did come across many cases where the parents were looking for an autistic spectrum diagnosis, where the issue was a behavioural one, but there were also many who were on the spectrum.
I shall listen to the programme Lahlah mentioned, as I find it fascinating.
As an aside, one of my 14 year old grandson’s friends is on the spectrum, and I did giggle at grandson’s explanation for his friend’s behaviour, ‘ We have to do that for Duncan, he’s got a touch of the ‘tism’! I loved how they all accepted it, and were happy to make adjustments to suit him.

Sorry, my computer posted before I was ready on my post of Tue 17-Jun-25 10:51:58!

With our ND grandchildren, I try not to get into conflict and keep calm when things happen. I try very hard to maintain the routines/diet, etc to what they are used to. This means non-judgmental communication with the parents. Much of what they say doesn't come close to the way I parented but my research of Neuro-Diversity since my child rearing days shows that they have more understanding of the issues than I ever could...probably why my daughter and I clashed so much!

Willow73

So sorry that your family are having problems with grandchildren Trisha123.
Does anyone know of any organisations or publications where there is advice for us grandparents as to how to treat these children. I’m constantly worrying about doing/saying the wrong things with regards to my autistic grandson who is 8 years old. I have tried to get advice from the parents but they are so busy it’s hard to sit and talk to them.
I’m sure a lot of you are in the same situation.

The Autistic Society can help you with that but mainly liaise with the parents to see what they want. My son won't allow bad behaviour but accepts that misunderstandings and meltdowns occur. He was lucky that his son was diagnosed early so got some really excellent help from The Child Development Centre and the school to manage although they still have issues. Autism affects people in different ways so what works with one child often won't work with another so it is difficult for anybody to accurately advise.
With our ND grandchildren, I try not to get into conflict and keep calm when

So sorry that your family are having problems with grandchildren Trisha123.
Does anyone know of any organisations or publications where there is advice for us grandparents as to how to treat these children. I’m constantly worrying about doing/saying the wrong things with regards to my autistic grandson who is 8 years old. I have tried to get advice from the parents but they are so busy it’s hard to sit and talk to them.
I’m sure a lot of you are in the same situation.

I suspect that the drive to include neurodivergent and other special needs children in mainstream schools came partly from considerations of funding. Education is mainstream schools is cheaper than in special schools or units.

Random thoughts:
If her diagnosis is recent, then she now has the freedom to stop hiding it - she now knows she is not just "thick".
She may be angry "why did you not know?" " you want me to be this way, but I cannot"
If she has a proper diagnosis, then the school have to put into place an adjustment plan to support her, which may have information to help.
If she is verbal and communicative, which it seems so, then she can be given behaviour boundaries and consequences. Just because she processes differently does not give her the right to behave badly. Her parents need to tell her this quietly and calmly and put her in a safe space if she acts out.
This is common to most 13 year-olds, but it may be that there are different ways of telling her.
They do need to get help identifying her triggers, and find out why she is seeking reactions from her siblings, what she hopes to get from them, and how they can help.
Just remember that she is not her label, is probably having a hard time dealing with the diagnosis, and is still an individual.
(I work in a class with 3 diagnosed children. One is extremely bright and knows how to play the system, one also has OCD and is "managed" by a series of bargains (if you sit still and listen for this lesson, you can have half an hour with the iPAD; you will have to do this test, so choose if now or during play time); the third is very quiet and withdrawn, and TA will sometimes take her out for quiet 5 minutes to calm her down).
Just one thing - it is more common than you think for multiple diagnoses, but often once the first is found the others may be missed - OCD, ADHD, claustrophobia, dyslexia, dyscalcula, mild forms of dyspraxia may not manifest as clumsy, but can mean poor or slow handwriting for example.

As to DGS, he may well be just trying to grab the attention back.
You could try some of the online awareness course yourself freecoursesinengland.co.uk/ www.futurelearn.com/courses/autism

Just for giving people hope, my DD's ex-fiance, now aged 47, was finally diagnosed as Autistic a few years ago. Despite this, he is highly intelligent (4 A-grade A levels and as a trainee Chartered Accountant in his twenties twice won the prize for highest-achieving student of his year in the entire of England and Wales. He has earned a six-figure salary for over 15 years and most of his high-earning friends have no idea of his autism. We only know because of his very odd behaviour patterbs when he was with our DD in his late twenties. The behaviour ruined their relationship (and several previous ones) but thankfully he has been in a permanent relationship with someone else for several years now.

The reality is that there is not a great help, apart the diagnosis, some benefits which you can use for therapies, OT and perhaps medication for which I am not sure.

Parents still have to live with the children no matter the problems ....

I know everyone has a different experience, but the only advice I can give is to work together to provide consistent support and enthusiastically accept any help offered.

My eldest grandson is 17. From being a tiny boy it was obvious that something was very clearly wrong. He was non-verbal and had many ‘typical’ signs of autism. In our county they do not diagnose formally until about 12 and although he was diagnosed with global development delay and was given one-to-one support as soon as he started nursery, formal diagnosis of his autism was much later. He had continuing support throughout primary school and managed to stay in mainstream education until he left school. It’s not all been plain sailing but we got there.

We made adjustments along the way to make life easier for him, such as serving food in bowls so he could help himself (which helped a lot) and a myriad of other tiny steps to help himself manage his world.

I am so proud of him. He genuinely is a delightful young man. He was diagnosed at 12 as being severely autistic, but with consistent support and us all working off the same page he has come along marvellously. At 17 I genuinely believe that someone outside the family may not realise that he was Autistic and his emotional intelligence is far beyond most 17 year olds.

I remember how worried I was for him as a small boy, but he has come along so well that I am sure he will be able to live a happy and fulfilled life.

I guess the point I am trying to make is that with support things may not be as bleak as you fear.

Wishing you the very best.

Oh for an edit button

I not In

Sites not sight 🤦‍♀️

Cossy excellent post, totally agree with all your comments.

GrannyGravy13

We have one GC who is neurodivergent, high functioning autism. Extremely intelligent, just thinks most people are too loud and rather silly.

Another one is being referred by their school (different parents)

In think two of our AC are definitely neurodiverse, one is not interested in getting diagnosed, the other is being assessed.

I have looked at multiple sights with online tests and I usually come out borderline.

With the 8.2 billion people on the planet it is not surprising that some are wired differently.

More understanding and patience from others when a neurodivergent child (and sometimes an adult) is having a meltdown would be helpful.

I am astounded by the amount of educationalists who have no knowledge or even empathy with these children.

🙂🙂🙂

icanhandthemback

My DIL asked to see the records the school held after her child was diagnosed by the NHS. The records stated that my DIL was determined her daughter had ADS and they were going to ignore the diagnosis whilst resisting an EHCP. My DIL removed her suicidal daughter from the school and home schooled. She is way ahead of her peers group in so many things and is winning gym competitions left, right and centre. At 11 years old she can discuss politics intelligently and give you the science behind airliners which bamboozles me.
Several of my uncles were ND. They were beaten into submission at school and were damaged for life. One of them was sent away to a boarding school. Despite being a wonderful musician, a fine engineer and artist, he self-medicated until his death because he didn’t want to risk being locked up again.

Well done your DIL and shame on her previous school!

We have one GC who is neurodivergent, high functioning autism. Extremely intelligent, just thinks most people are too loud and rather silly.

Another one is being referred by their school (different parents)

In think two of our AC are definitely neurodiverse, one is not interested in getting diagnosed, the other is being assessed.

I have looked at multiple sights with online tests and I usually come out borderline.

With the 8.2 billion people on the planet it is not surprising that some are wired differently.

More understanding and patience from others when a neurodivergent child (and sometimes an adult) is having a meltdown would be helpful.

I am astounded by the amount of educationalists who have no knowledge or even empathy with these children.

My daughter went through school and Uni before her diagnosis, girls tend to mask, but once she’d had her assessment and subsequent diagnosis it all became clear and explained various behaviours, head banging as a baby, food issues as a child, very withdrawn as a teenager. She still lives at home currently, she’s a primary school teacher, also has AHDH (a much misunderstood condition) and no major behavioural issues.

A very close friend has a 13 year old granddaughter diagnosed with Autism, like my daughter, she is high functioning, but a complete and utter nightmare for her poor family and also at school, contending with autism and puberty is incredibly hard for both child and family.

Autism appears to affect boys and girls differently, then within that every child differently.

I wish OP and her family best wishes

My DIL asked to see the records the school held after her child was diagnosed by the NHS. The records stated that my DIL was determined her daughter had ADS and they were going to ignore the diagnosis whilst resisting an EHCP. My DIL removed her suicidal daughter from the school and home schooled. She is way ahead of her peers group in so many things and is winning gym competitions left, right and centre. At 11 years old she can discuss politics intelligently and give you the science behind airliners which bamboozles me.
Several of my uncles were ND. They were beaten into submission at school and were damaged for life. One of them was sent away to a boarding school. Despite being a wonderful musician, a fine engineer and artist, he self-medicated until his death because he didn’t want to risk being locked up again.

For people who are curious about the increase in autism diagnoses, the recent BBC R4 series (available on BBC Sounds) called ‘The Autism Curve’ was interesting and illuminating. Five episodes looking at different aspects and all really helpful to helping us understand the background to this.

I’m very close to a younger friend whose youngest son is autistic. He has serious behavioural problems and was non verbal until 5 years ago.
Me and my friend often discuss what’s going on Re the increase.
We are constantly pondering this as her son’s school ( wonderful 🥰 ) has had to considerably expand into another building to accommodate the increase.

My son now aged 45 went through most of his school education with undiagnosed autism. In the 80s high functioning autism (or Asperger’s, the label he was given at 15) was only just emerging as a diagnosis. We were told high functioning autism was extremely rare but of course it isn’t rare at all. Looking back it’s obvious to me that there were many undiagnosed children in his school - some like him were struggling or written off by teachers. I don’t believe it’s over diagnosed or a new phenomenon at all - I can trace it back in both mine and DHs family (and now in our GC)
Many children years ago would have gone to ‘special’ schools but the drive in recent years has been for children with additional needs to be educated in mainstream schools.

Some children on the spectrum may go undiagnosed as they can cope easily in an education setting, although they may struggle with other aspects of their lives which may not become obvious until they are much older.

As other posters have said the National autistic society will be able to give your daughter details of local support groups. These groups are very useful as not only can you unload your feelings, other parents can give you practical help by sharing their experiences along this very difficult path.