A-Z

Having a grandchild on the autism spectrum

The road to diagnosis

Autism spectrum disorders may not become apparent for several years so some children have a period of their lives in which parents and other family members do not suspect that anything is the matter. Other children have more obvious signs from an early age, and these signs encourage parents or carers to seek answers. The grandparents we talked with recalled different experiences of realising or finding out that their grandchild or grandchildren were on the autism spectrum.
 
“I didn’t realise because they did everything normal babies do”
The majority of grandparents said they hadn't noticed anything unusual about their grandchildren’s development. The children had met their developmental milestones as expected and one grandmother described how her grandchildren were “lovely, beautiful, bonny babies who seemed to be doing everything in the right order”. One grandson lived with his parents and grandparents until he was two, and his grandmother recalled how well he interacted with adults. Another grandmother worked in the field of disabled children but didn’t recognise anything different about her grandson. A few of the grandchildren developed as expected for the first 18 months or so, and then regressed.

The most common sign grandparents talked about was problems with language and speech. Some of the children had been slow to develop even simple language and had problems communicating from an early age, whereas others suddenly “lost the language” they had. One grandparent described how her grandchildren had “stopped making any noises” and just went quiet.
 

Jan works in the field of disabled children but wasn’t aware that her grandson was any different...

Jan works in the field of disabled children but wasn’t aware that her grandson was any different...

Age at interview: 59
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Can you tell me about his diagnosis, when it happened and what led to it?
 
Okay, even though I work in the field of disabled children, we really were not aware that he was any different to any other child, really for the first two years. I think that’s because he lived with a lot of adults. He lived with myself and my ex-husband, his own mum and dad, and his uncle. That’s my other son. So he related to a lot of adults. We were all very involved in his care. So, he related to them very well.  And he was, an absolutely delightful child. I mean looking back a lot, a lot of parents do say, when they look back that they were exceptionally good and I think actually when I look back, [grandson] was an exceptionally good baby. Very easy, very placid.
 
And because he was the first child born within the family. There weren’t any cousins or, my daughter was the first one of her peer group to have a child, so she didn’t have friend’s children for him to play with, we weren’t aware of his difficulties around social relationships, because he didn’t actually play with many other children.
 
Speech was a little slow in coming, but nothing kind of worrying. And he reached all his other milestones, you know, when other children do. So it wasn’t until he got to about two, two and a half, that we began to realise that actually, maybe there are some issues. And I think for me it was when my daughter was trying to toilet train him that began to kind of worry, because he didn’t seem to understand the need to communicate that he wanted to go to the toilet and that’s why toilet training was quite difficult. And that’s the sort of first clue I think. 
 
 

When Janet’'s grandson was around two, “it was like something had switched off and he went...

When Janet’'s grandson was around two, “it was like something had switched off and he went...

Age at interview: 65
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
If I could kind of take you back to when they were little, when they were babies, when they were first born. When did you first realise something was wrong. Or didn’t you?
 
I didn’t realise to be honest at all. Because they just did everything that normal, normal babies do. Saying ‘daddy’, ‘mummy’, playing with toys, just doing normal baby things. And then when my grandson got to about two and a half, it was just like something had switched off, and he went introverted. Wouldn’t, wouldn’t have eye contact. All the foods that the he liked, normal things that he ate, he just was refusing to eat. That was difficult for my daughter as well. 
 
And then other people started to notice as well. My sister in law noticed some behavioural problems, because she’d worked with children - she was an occupational therapist and she’d worked with families with children with special needs - and she sort of picked up on one or two things, and that was when my daughter decided to seek medical help. And they went through a process called CDC which takes four, four weeks. They’re observed by a panel of experts. And eventually you get the diagnosis then. 
 

 

 

Bryan and Moira thought their grandson was just very quiet, but there were a “few jangling notes...

Bryan and Moira thought their grandson was just very quiet, but there were a “few jangling notes...

Age at interview: 72
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Bryan' When [Grandson] was very young, an infant, he was always quiet. Most babies cry and sometimes cry for quite long times. [Grandson] never did. [Grandson] was placid.
 
Moira' He did have temper tantrums. He did have tantrums sometimes. He did cry sometimes.
 
Bryan' Yes, but not nearly as much as other children, and certainly not as much as…
 
Moira' His brother.
 
Bryan' His brother, or indeed his uncle or indeed his mother for that [name]. He was much more placid as young one.
 
Moira' He was a placid baby. He was, yeah. Placid.
 
Bryan' I mean unusually so. Noticeably so. And so I think we got, we got to feel actually at the origins I think, aren’t we lucky, we’ve got a quiet one, you know. But then there were just one or two little jangling notes about, ‘how quiet?’ Nobody actually thought at that stage that there was anything, you know, particularly significant. Just a quiet baby, one that didn’t cry as much. Weren’t we lucky? And it wasn’t until much later that we began to realise the problems were deeper than that. 
 

 

 

Brian and Lucy's grandson’s expression changed soon after he had the MMR vaccination.

Brian and Lucy's grandson’s expression changed soon after he had the MMR vaccination.

Age at interview: 70
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Brian: You know we’ve got videos of when he, when he was small you know.
 
Lucy: And he was perfectly normal.
 
Brian: Just a normal, ordinary child…
 
Lucy: Little boy.
 
Brian:…doing the, doing the things…
 
Lucy: Yes.
 
Brian' as normal children do
 
Lucy' And his eyes changed, didn’t they Brian?
 
Brian: Yeah.
 
Lucy' The way he looked at you?
 
Brian: Yeah.
 
What do you mean by that?
 
Lucy' Not, well sort of a faraway look.
 
Brian: it was in, in the expression, his expression changed.
 
Lucy: Yes. You know, when you look into somebody’s eyes that have got a problem, you know, with their brain they, they’re not, as if they’re, you know, sometimes when you stare away into the distance and go a bit out of it if you like?  That’s how he looked. That’s how his eyes were.
 
Brian: His expression doesn’t really change at all does it?
 
Lucy: No. No. It doesn’t. Except when, I mean when he smiles he’s beautiful. Yeah.
 
“He’d always shut a door if we were in the room”
Other grandparents said that they noticed signs that concerned them and their children. A couple described how they had always had a feeling that something was wrong but for most, the change in the children was sudden. These signs included unusual behaviours, such as lining up cars, always touching particular textures or disliking certain foods, being sensitive to sounds or lights, running into people, not reacting to their name and watching the same television programme over and over again. Several of the children didn’t like mixing with other children and were described as “loners” or “completely in his own little world” or “not bothered” about what was happening around them.
 

Irene’'s younger grandson would pick up minute specks off the floor and give them to her. He also...

Irene’'s younger grandson would pick up minute specks off the floor and give them to her. He also...

Age at interview: 61
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well he was very slow at developing language and then he suddenly lost any language that he had. It just went. He was no longer able to even use the labelling you know, early babble labelling they do and point, don’t they? And it just went. And I noticed that he was very curious around certain small, small things. Even when he was quite little, he would go to the edge of a carpet and trail his hand between the texture of the carpet and the texture of the wooden floor. And do it for ages. He would come and pick up minutiae of little specks on the floor. Crumbs I hadn’t even seen. And I thought, “I’ve hoovered today, for heaven’s sake where’s he found that?” But they were little minutiae. But he was insistent at giving them to me. He didn’t like anything that disturbed the, the anything around him. And it’s difficult to say because things go in stages as well. 
 
At one stage he didn’t like going through any doors. He was okay really with home doors, where he was part of opening them, or Grandma was opening or whatever. But he hated automatic doors, so it became very difficult, even just to go down and go in and out of supermarkets to shop. He began to take his toys and post them through things. So gaps between the rungs of chairs or between bits of furniture or down between the cooker and the fridge and you know, you just go, you think, “Oh he’s playing happily with toys on the floor” and then he’d come crawling out into the… or tottering out later into the kitchen, and you’d think, “Hello! What are you up to?” And you’d suddenly think, “Oh my God there’s nothing left in the living room floor where he’s been playing. It’s all been posted into things”. So it was quite funny really. 
 
But all these sort of things add up to a picture that’s not a usual picture of what children do,
 
 

Helen became concerned when her grandson watched Teletubbies over and over again but didn’t pick...

Helen became concerned when her grandson watched Teletubbies over and over again but didn’t pick...

Age at interview: 57
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
And tell me about what led up to his diagnosis?
 
Well. As I say the first thing that happened was he lost language. And he would watch the Teletubbies and he’d watch it over and over and over and over again. And I thought it was quite extraordinary that watching it and the exposure he had, he wanted it on, so it was his sort of thing. It wasn’t that my daughter was forcing him to watch it. He was demanding it to be on. I couldn’t understand why he couldn’t pick up the language that was on there. Because it’s very simple. It’s lots of sounds and obviously it’s been researched that it should be sounds that match what children are likely to want to say. And it didn’t make any sense to me that, exposed as he was to this over and over and over again, that he wasn’t making the sounds and reacting to it. So that was the first thing. 
 
 

Jill dreaded picking up her grandson from school every day because he was always kept behind for...

Jill dreaded picking up her grandson from school every day because he was always kept behind for...

Age at interview: 69
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

What led up to my grandson’s diagnosis was... that... every day, when I went to pick him up from school, I’d be asked could you wait here and we just have to say something to you. So it was like being kept in after school myself, day after day. I would just dread it. There would always be some reason... that... my grandson had fallen or pushed somebody or bumped into somebody and caused them to fall. He ran across the playground in a zig-zag. He ran straight at mothers carrying tiny babies and caused them to stumble. I know myself. He still does it. He’ll run at somebody in the street who has a walking stick or a zimmer-frame. He’ll run at other people too. It’s not that he picks out the people who are most vulnerable. But he doesn’t seem… he’ll run at somebody pushing a baby in a buggy. He doesn’t... understand that people are not smoke that will... part when he touches them. He seems to be very amazed at being about to touch something or somebody and... and feel them with his fingertips. And he...  he loves to pick things up in the street, sticks, stones, conkers, pebbles. I think that’s just any seven year-old, not, not an autistic spectrum seven year old. But the thing that he will do with them, which isn’t so ordinary is to wipe them across his mouth and or he’s doing it with bus tickets at the moment, which I try to stop him doing. I explained that they’ve been on the floor and they’ll have germs on them. And he understands this intellectually but he just likes to do it. 

 

And you say to him afterwards, “look you were nearly run over.” Well in my case you scream at him afterwards because I’m not that calm all the time. So I scream. “You nearly lost your life.” And he, sort of, and answerably he says, “But I didn’t. I was okay.” And to him that’s logic and, again that could just be a seven year old, but I think it’s him and I think it’s the kind of thing that the school noticed, and that’s why they called in the educational psychologist.

 

 

 

Sally’s grandson could not cope with other children.

Sally’s grandson could not cope with other children.

Age at interview: 57
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well he was, he was very little. I was trying to, to work it out. Trying to remember it all. When he was born he, well he had a difficult birth, he had a long, Erica had a very long labour and he had to have a ventouse delivery.  And so his head was a little bit distorted when he was born, and he did have a bit of cranial, went to a cranial osteopath to have a bit of massage and manipulation and that. 
 
As he got a little bit older he, we realised he was very sensitive to noise and he would hold his hands over his ears. Even when he was quite, quite tiny, maybe only about six months, he would hold his ears when there was a lot of noise. And then as he got a bit older, and started to be, you know, expected to be more sociable. He couldn’t cope with other children. And he would sometimes get a bit violent, and he would hit out, which was a bit of a worry, and then the noise issue became much worse and if other children were crying he would really be distraught. He would hold his ears and cry himself, and then kick out and, and get quite distressed with it all.
 
 

Jan found it upsetting that her twin grandsons would ignore her when she visited and remain glued...

Jan found it upsetting that her twin grandsons would ignore her when she visited and remain glued...

Age at interview: 64
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
What happened was that when they were about one and a half, they were seemingly absolutely fine, normal, healthy children, who were developing a few words in the normal way of a child. Then in the next three months I think the best word to use is like they disappeared. They stopped making any noises at all. And they went very, very quiet, and when I used to visit, and I was probably there two or three times a week at least. There were often, the television was on, and maybe the Teletubbies was on. It was quite startling really, because when I got there, my older grandchild would always have sort of heard me coming. She would have been, even at nine months she’d have been crawling to the door, she’d have been looking in my handbag for the chocolate buttons or something. But the boys were never like that. They never came. They would just be sort of sitting or popping about. 
 
And if the television was on, particularly the Teletubbies, you could go in and you’d be saying, “Hello, hello, here’s Granny.” And, and in order to get any response you had to actually get right in between them and the television. And the response you got was actually they pushed your head out of the way. And I have to say that’s one of the things I really found the most upsetting. It was quite a, it just seemed such a strange kind of behaviour. And I suppose it was when that had got sort of around the Christmas time sort of when they were, just before they were sort of three months off being two. And it was just after that that I can remember my daughter, well I can remember thinking I’m going to have to talk about this, and then in fact my daughter said, to me that they were really worried about their talking. And she went to see her health visitor very shortly after that and then referrals were made.
 
Several of the children cried for lengthy periods and their grandparents were unable to pacify them. Some also had “tantrums” and would become very distressed in particular places. Grandparents described how the grandchildren had “rages” or “exploded”. Other signs included difficulties nursing and sleeping, bowel problems, and difficulties toilet training.
 

Dorothy'’s granddaughter became very distressed in supermarkets and danced “like a little fairy on...

Dorothy'’s granddaughter became very distressed in supermarkets and danced “like a little fairy on...

Age at interview: 82
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well they were both lovely, beautiful, bonny babies who seemed to be doing everything in the right order until, with [granddaughter] we became very aware when she was about two years old, that going into a supermarket was a nightmare. And we now know of course, the sensory onslaught that a supermarket is for people on the autistic spectrum. 
 
She immediately screamed when we went into it, and we could see no reason for this whatsoever, and obviously couldn’t understand it, and did all we could to accustomise her to it. By going again and giving her little rewards and so on for going, but she always hated it, and still does, in fact, something that we haven’t quite got her accustomed to even yet. 
 
 

Interview 7 remembers how her son didn't nurse well and 'cried non-stop'.

Text only
Read below

Interview 7 remembers how her son didn't nurse well and 'cried non-stop'.

Age at interview: 63
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
Can you remember back to when he was diagnosed? What led up to that?
 
I’m just trying to think. Well she always worried about the fact that he couldn’t nurse very well. He would nurse a bit, and then he’d scream and scream and cry and then he’d nurse a bit and scream and scream and cry. When he was born, I was there and I had him in my arms for several hours while she caught up on a bit of sleep, and he was fretting and crying all the time. And it’s very unusual, because when a baby’s born for the first twelve hours they sleep very deeply, so the mum then has a chance to have a sleep as well – the last sleep for many months. And I thought that it was strange. So that was the first sign, it was very unusual. And then it went on like that for many months. He wouldn’t nurse properly, he was always being sick, he slept very, very badly and he was always fretting and always crying. I remember taking him out once and he was just non-stop, always upset, always crying. 
 
Some grandparents discussed their concerns with their children, while others felt they didn’t want to say anything at first. When they did raise their concerns, they were relieved to find out that their children were also worried about the same behaviours. A few people worked in social services and had some experience with disabled children. For one family, this meant that they “all had a fair idea of what was the matter”.
 
“People think when you’ve gone through it with one child, it would be easier”
Some grandparents had two grandchildren on the spectrum and, often, the second child’s diagnosis was a more straightforward process in practical terms because they had experience. Emotionally, however, the second diagnosis could be particularly upsetting. One grandson was diagnosed with Asperger syndrome at the age of 10, after his younger brother was diagnosed with autism aged 2. His grandmother said that health professionals were able to look back retrospectively at his childhood, in the light of his brother’s diagnosis. Where two siblings were on the spectrum, they were described as very different by their grandparents. A grandmother of twin grandsons said that the “major signs sort of came together” even though the two boys had very different temperaments.
 

Dorothy’'s grandson got very distressed about people coming to the house while his sister was very...

Dorothy’'s grandson got very distressed about people coming to the house while his sister was very...

Age at interview: 82
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
But at again, at about the age of two he started showing completely different symptoms. He hated people coming to the house. Even us, who visited quite often. We weren’t living within walking distance then. We were 150 or so miles away, but we were still visiting regularly and he knew us. If unknown people came, or even us, or visitors of any kind came to the door he would throw himself to the floor screaming, and would only with great difficulty be persuaded to come and, not even to come and talk to us, but even to stand up and play normally.
 
Well they are funny. They’ve both got a sense of humour. That’s again, I don’t know if that’s particularly common in autistic children. But they are, they are both funny. 
And they’re both, very, very loving. They have never really been distant from, from us. 
[Granddaughter] will always come and see visitors. She will then just having seen them and said hello to them, given them her lovely smile, will then quite happily disappear again and not have anything to do with them. But on the other hand she is, [Granddaughter] has an instinctive way of knowing, I think, whether people really like her or not.
 
“It took another 18 months before we got the diagnosis”
Most grandparents said that their daughters or daughters-in-laws approached the GP or health visitor and raised their concerns with them. One daughter was very keen to get her ten year old son diagnosed before he started secondary school and so “led the process”. Getting a diagnosis was often “not very simple or straightforward”. In some cases, parents were told not to worry and had to be persistent in getting a diagnosis for their children. Other GP’s referred the children to specialist centres for assessment. There is no standard diagnostic test for autism; diagnosis usually involves a combination of interviews with parents (and sometimes grandparents), observing the children playing, and filling in questionnaires. Some children had blood and urine tests to rule out other conditions.
 

Jill realised how concerned she was about her grandson when she told someone about him and...

Jill realised how concerned she was about her grandson when she told someone about him and...

Age at interview: 69
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

When I realised that the problems were coming thick and fast, I think he was about getting on for five and a half, probably, maybe getting on for six and his little boy problems weren’t going away and in fact there seemed to be more of them, and I remember telling somebody about it, and it’s a bad habit of mine, I started really shaking like a leaf when I was talking about it. So I realised that it was, that it really mattered to me but it doesn’t seem like the end of the world. It’s not for me to say that, because it’s his life, not mine and I just hope to god he won’t have significant difficulties as he becomes a teenager and so on, into his manhood. But I most hope that he won’t have to feel that he has to be in any way isolated.  

A few grandparents attended appointments with their children and grandparents, while others were told about the process afterwards. One grandmother was not happy about the diagnosis of childhood autism and asked for a second opinion. The second appointment confirmed that her grandson was on the autism spectrum and that “his needs were probably a bit more severe than we’d realised”.
 

Helen said that the multi-professional meeting she attended with her daughter was “the most...

Helen said that the multi-professional meeting she attended with her daughter was “the most...

Age at interview: 57
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

And then he started to be assessed. I think that was driven through the GP in the end. And he had a battery of tests. He was tested by about eight different professionals, and it was November 2005, about 7th November, and my daughter and her husband were summoned to a multi-professionals meeting and they asked me if I would go too, because I had got knowledge of the special needs department of the of the local authority and I knew quite a lot about what might happen. And I said, to them, well I was quite clear that it was their meeting. That I would only intervene if I thought that I could add anything. I was clear that they were the parents, I was only the grandmother, but I did have rather particular knowledge.

 
And we turned up at this meeting in a place not far from here, not in this local authority and sat in a room and I thought this was the most appalling experience that any set of parents should ever be expected to go through, where eight individuals sat round and told my daughter and her husband all the things that this child could not do, and how he failed on these tests, and that test and not one person had any grace to say, a) that he was a nice little boy, or b) notice anything that he actually could do. It was compounded by the fact that the paediatrician was a complete and utter, I think we’d have to put some bleeps in really now for the word I’d want to use about her. And she certainly should never have been working with parents and children. She was an absolute nightmare. 
 
And the upshot of this was that this little boy was put on a waiting list for absolutely everything, nothing was offered to immediately at all in terms of help, and they were told, my daughter and her husband were told that if they didn’t accept the diagnosis that he was autistic there and then, he also would not be put into the Earlybird Scheme. 
 
After the diagnosis, grandparents were able to look back on the behaviours that had concerned them and make more sense of them. At the time, some said that they or their children originally thought their grandchildren were naughty but later on realised, as one grandparent put it that “a lot of it was frustration because they couldn’t express how they were feeling”.


Donate to healthtalk.org
Last reviewed August 2018.
donate
Previous Page
Next Page