Gransnet forums



(88 Posts)
smarti Wed 06-Jan-16 01:54:37

Do any other grandparents out there have grandchildren with autism? We have two beautiful boys - 6 & 3 who have both been diagnosed during the past year. The younger one with severe & the older boy with high functioning. We are all involved in therapy and seeing good results but it's great to know others who understand the emotional side of this issue for the relations.

Jane10 Wed 06-Jan-16 08:01:34

I only work with adults with ASD but I know there are Grans on here with GCs with ASD or worked with children. You are most certainly not alone!

hildajenniJ Wed 06-Jan-16 08:28:52

Hello smarti. I have four DGC. One girl and three boys. The two middle boys have ASD's. The elder one is seven yrs. old and had a diagnosis of Asperger's syndrome when he was five. The younger one is five yrs. old and has a severe speech delay, he has been seeing a speech therapist since he was three, and is awaiting a diagnosis, probably of high functioning autism. They are both lovely boys, although the little one is very stubborn and belligerent. He has a fascination with all things electrical, we took them out for the day yesterday, we went to the Science Museum in Glasgow, in the car we discovered that he had brought a telephone socket from home, in his pocket. Life can be quite challenging with them, but I love them to bits, and couldn't imagine them any other way. My seven yr. old Aspie GS is gradually learning to cope with his sensory problems. He takes his ear defenders with him to anything that promises to be noisy. Neither boy is coping well at school, so my DD has taken the brave step of home schooling them, starting very soon. This is quite a long post, I could go on, but think I'd better leave it there. I'm glad you are all learning as you go along. So are we, it's all you can do. I try to offer as much support as I can, but we live about 90 miles apart. DD knows I'm only at the end of the phone though!

ninathenana Wed 06-Jan-16 11:15:23

I have a 3 yo grandson who has speech problems and although some professionals suspect he is on the spectrum has not had an definite diagnosis yet. He shows various traits but fortunately at the moment these do not manifest themselves with any challenging behaviour and he is on the whole a cheerful little fella and quiet bright. He has one to one help at preschool and DD has been told he will probably not manage main stream school.
I also have a 24 yo son who was diagnosed as high functioning in September last year. His main problems are social and communication. We always thought he was just a bit of a loner, it was DD male friend who is ASD himself who suggested we get him diagnosed.

iaincam Wed 06-Jan-16 11:30:36

Severe autism is awful and very difficult to cope with, but I have many education law clients with children at the higher functioning end (Asperger's etc.) who just need to encourage their schools to access the special budgets available under "Additional SEN Support" or if that is insufficient through an "Educational, Health and Care Plan". Unfortunately a new SEND Code of Practice came out a year ago and many schools have not updated their policies and procedures.

Many people at the high end of the autistic spectrum can have very successful careers, often in "techie" roles or academia. I had a law lecturer who delivered lectures facing away from his students when he was having a bad day and could easily be diverted by asking him about tram timetables in Strasbourg (which he knew by heart!).

ninathenana Wed 06-Jan-16 11:41:09

That made me smile iaincam it's brilliant that he found coping strategies.
Unfortunately my son has zero confidence when it comes to his abilities and being able to travel alone etc. so has never been employed. His talent is spellling smile he was writing words correctly at four/five and is a walking dictionary.

hildajenniJ Wed 06-Jan-16 12:46:52

When DGS started school last summer the class was asked to draw a picture of themselves. My DGS struggled with this, only managing a big swirly circle. My DD suggested that next time they did art the teacher should ask him to draw something he was interested in, so she asked him to draw an electrical circuit, and wondering what it would turn out like. He drew a beautiful circuit with fuse box, switch, socket and light bulb! He is still very difficult to understand when speaking.

heavenknows Wed 06-Jan-16 13:31:19

I have a 6yo and a 9yo with autism. One is high functioning, the other is not. One is homeschooled, the other is in a specialised school.

I also have a dgs that is 10yo that possibly has some issues, however, his mother (my dd) refuses to have him checked - she thinks strict discipline is the cure for SNs. hmm DD came to me on a couple occasions, saying she felt he had some SNs, however, when she asked my opinion and I said "if you are concerned, get him referred to a paediatrician so he can be assessed." She ignored that, came back a few months later (having done nothing to address it) and asked my opinion again. Of course, I gave her the same answer. She wasn't pleased. She's still done nothing - just complains that they have to be very strict/harsh with him in order to "keep him in line." That was 2 years ago.

ninathenana Wed 06-Jan-16 13:39:37

smile hilda it's amazing isn't it. I bet not many adults me included could do that.
Does your DGS get upset/annoyed if he can't make himself understood? We spent several minutes trying to work out DGS's friend's name on his last visit. We don't make an issue of it of course as I'm sure your family don't.

ninathenana Wed 06-Jan-16 13:42:30

Oh dear heavenknows sad

heavenknows Wed 06-Jan-16 13:50:17

I do think my mother struggles with the idea of autism. She has difficulty engaging with the dcs because she is abroad, so really can only speak to them on the phone (she is a technophobe - my sister is attempting to teacher her facetime, but she's uncomfortable doing anything with a mobile phone but ringing someone, bless her). They both are quite shrill and speak very quickly, so can be very hard to understand. They assume that anything they know, that you know also - so they can flip from one subject to another in the blink of an eye without missing a beat, leaving you trailing in the dust.

I have a nephew with autism as well - he's 9yo - and my mother asks questions about his behaviour to me as she doesn't always understand it, and I try to explain. She won't ask my sister (his mum), as she can be quite touchy about it and takes it as criticism.

f77ms Wed 06-Jan-16 14:35:38

I have a grandson who has been diagnosed with autism , but what I wanted to say was I cannot believe the massive increase in children being diagnosed with some form or other .

ADHD is another disorder which is on the increase , what we used to label as just badly behaved and in need of some attention , just what is going on ?

trendygran Wed 06-Jan-16 14:48:37

I feel for you Heavenknows ,and for your grandson if your dd won't acknowledge his problems. A friend of mine has the same problem. Her 3 year old grandson is definitely on the Autistic Spectrum but his mother refuses to admit this and my friend has even been told by her son that if she mentions this she will not be able to access her grandson and his brother. My friend is a retired primary headteacher with some experience of Autism and is quite genuinely concerned about her gs's future. I worked with Autistic children for many years and know that early intervention can make such a difference . I know how hard it is for parents but they do need to consider the child' s future experience of school and life .

Greenfinch Wed 06-Jan-16 15:10:08

My 8 year old grandson has autism: his twin sister does not. He is in mainstream school with a one-to -one helper and has reached all his targets so far. However ,he has two main problems. One is in the area of social skills. He is an extreme extrovert and behaves inappropriately towards other children by hugging them and not giving them their personal space They obviously find this difficult. He doesn't get invited to parties (like his twin ) because the other mothers regard him as excitable .Secondly he is beginning to have low self-esteem in some areas mainly because he has a helper but also because his sister writes and draws so much better than him. They say at school that his perfectionism is holding him back because he tears up and starts again anything that he does not consider good enough. On the other hand yesterday he achieved a merit "for his understanding of chronology" whatever that was.
In my early years of teaching we had no children with autism but we did have "naughty children". Thank goodness we have advanced so that these little ones can be helped from the beginning even though it means wearing the label.

heavenknows Wed 06-Jan-16 15:29:27

ADHD is another disorder which is on the increase , what we used to label as just badly behaved and in need of some attention , just what is going on ?

What is going on is that these things are being diagnosed, instead of children being written off as naughty.

I can tell you that my 9yo child with ASD and ADHD (plus hypermobility and sensory problems) is not "just badly behaved." Watching him struggle with things like impulse control due to the ADHD where an idea gets a fishhook like hold into his brain and overrides all sense of danger. Watching him struggle at night to shut down and sleep so the only way he gets sleep is by taking medication that knocks him out, but only for part of the night. He's terrified of taking tablets, so he can't take the time release tablet that will knock him out for longer. Watching him literally on the go during the night and then from 5am when he gets up for the day until the medication knocks him out at night, constantly touching things, talking (often repetitively), walking, wriggling in his seat, always moving in some way, shaking or rolling his head, rolling his eyes while he's talking to try to focus on what he is saying when he's really wound up.

I feel sorry for all the children that were dismissed as badly behaved that didn't get the support that they needed, as it may have made a huge difference in their lives.

rosesarered Wed 06-Jan-16 15:35:04

Having a label is better than being misundertood,isn't it greenfinch as was the case years ago.My DGS is 11 years old and is difficult and a real challenge.He is very intelligent, but is not Aspergers, it is autism.He also has ADHD, and possibly, other problems. he is very anxious and depressive.He was diagnosed at age 3. He is now at a school specific to his needs, and likes it there, and is doing fairly well.He will only learn something or perform a task when he wants to( either at school or at home.)He was in nappies until age 7 and still refuses to wash ( has to be done for him.)He will only eat certain foods, and is underweight and undersized for his age.He has always had severe meltdowns which have been very frightening to deal with, but is slowly getting better at dealing with anger.He is very literal, and likes things done in a certain way.He sadly has no friends at all, and beyond the family circle will not speak to anyone.He needs attention at all times and is not good at being or playing, by himself.He takes various medications to keep him mentally stable, both at night time, then more in the mornings, they make a huge difference to his behaviour.We have no idea what the future holds for him.The main thing though is that he is diagnosed and is in'the system' to access help from SW when needed.

Greenfinch Wed 06-Jan-16 15:52:20

Agreed roses. Your grandson sounds so like mine in many ways and we now think he has ADHD as well. He is constantly on the go and is forever climbing all over the furniture while holding a conversation. He only sleeps for about 5 hours a night and there is no variety in his diet. He has been prescribed some milk shake type drinks and has to take a multi vitamin supplement. The only time he is still is when playing chess. Like yours he is very clear about what he wants to do and yesterday told his teacher (a very laid back young man) that he only wanted to do things that are fun to which the teacher replied "all learning is fun". Things are not too bad at the moment but we do worry about the teenage years.

annsixty Wed 06-Jan-16 16:30:31

My heart goes out to you all. I just wouldn't know how to cope but I suppose that like everything else we can when we have to.

Nelliemoser Wed 06-Jan-16 16:31:10

Sympathies to all. I will not beat about the bush it can be a very difficult condition to live with for the individual and the carers.

My OH has aspergers and the sort of issues that come with the conditon have raised many problems for him at work and in our relationship.

There are those people with severe autism and challenging behaviour which can include self harming and others who manage to hold down jobs and relationships but are just a little different.

iaincam has a good point.

Real difficulties in getting support can arise when these young people leave school.
There are over 18 "in betweeners" who can perhaps excel in certain very specific subjects but cannot manage the situations of every day are often left to fend for themselves.

The local authority I worked for would ony accept Autistic spectrum children as needing support if they actually attended special schools for children with learning disabilities. Support services for this "intermediate group" are unfortunately very patchy around the country.

All carers need to badger their LAs for support long before school leaving age.

Crafting Wed 06-Jan-16 16:54:11

I have autistic grandchild too. Lots of sensory issues and social skill problems. It is heartbreaking. Nellie sorry to ask (and please do not reply if you'd rather not) but did you know your DH had aspergers when you got together? I often wonder what will happen to my darling GC and whether he will have a job or family.

TriciaF Wed 06-Jan-16 17:04:14

What is going on? It's similar to the diagnosis of dyslexia - we've always known that some otherwise clever people can't read or spell, but most of them learn to cope. eg by choosing a more practical carreer, marrying a literate husband or wife.
I believe that there are very few of us who don't have some kind of learning or personality problem, no such thing as "normal".
I'll probably get shouted down on this, but we all have to make the best of what we've got, and it's unrealistic to expect special needs money to be spent on these hundreds, maybe thousands of children with moderate problems.
I spent my working life as an EP and can tell you there have always been many children who need extra help, most much more needy than those in the so-called "autistic spectrum."

heavenknows Wed 06-Jan-16 17:22:43

I'll probably get shouted down on this, but we all have to make the best of what we've got, and it's unrealistic to expect special needs money to be spent on these hundreds, maybe thousands of children with moderate problems.
I spent my working life as an EP and can tell you there have always been many children who need extra help, most much more needy than those in the so-called "autistic spectrum."

You won't get shouted down. I will, however, ignore it for the rubbish that it is. hmm

Jane10 Wed 06-Jan-16 17:30:07

I entirely agree. Trisher clearly doesn't understand that the autism spectrum is just that-a spectrum. There are individuals who fall on this who are severely learning disabled with dangerous challenging behaviours and those who are highly intelligent and are fortunate to have had the support to enable them to work to their maximum ability. I've worked with people from both ends of the spectrum. I find that the more obviously affected people tend to have support and understanding but the more able ones can suffer greatly but in such subtle ways that they 'fly below the wire' and tend to be missed.

Nelliemoser Wed 06-Jan-16 17:40:03

Crafting No in the 70s even if autism was. He was a little shy and awkward. The difficulties keeping jobs started to become apparent and I found out more.
OH recognises the list of signs I showed him but won't take it on board.

Tricia I was only diagnosed as dyslexic when I was 50 by the OU. It was unknown when I was at school. I tested as being bright but could not perform well in general school work. I survived but did miserably in my exams. If only help had been available then I could have done much better. just perhaps by something such as extra time. or taking my writing errors into consideration.

You cannot begin to compare dyslexia with the difficulties presented by Aspergers/ASD.

It presents a whole range of other difficulties in social communication and comprehension and those with very poor social skills do not do well in society generally. An inabilty to empathise with or understand others feelings is a big disadvantage in all aspects of life. Many with the condition are very vulnerable to exploitation,they do need support and it should be provided.

Greenfinch Wed 06-Jan-16 17:40:09

Thank you annsixty. Your empathy is much appreciated coming as it does from someone whose life is far from easy.You know what it is like to struggle.