A-Z

Parents of children on the Autism Spectrum

Fears, anxieties, sensory issues and meltdowns

Not all children on the autism spectrum experience above average degrees of fear and anxiety, but many parents described their children’s fears and anxieties about various things and these are discussed here. Fears were individual to each child and included loud noises, bright lights, windy and stormy weather and the possibility of being hit by falling trees, meteorites or catching diseases on buses. Unfamiliar things and people, strong smells and particular textures could also upset and disorientate children. Often parents knew what was likely to affect their children and could reassure them, though some children tended to keep their fears hidden, particularly at school. The intensity of some children’s anxiety and fear made everyday life difficult for the children and their families. Some children couldn’t face going outside, others were upset if they had to go shopping or do something that involved being in a crowd (see ‘Going out’).

 
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Rachel describes a trip to the shoe shop with her sons.

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Age at interview: 42
Sex: Female
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On Saturday we had to go buy some shoes from [name of town] and the screaming and the tears and the crying to get him to leave the house was just horrendous, because he just cried and cried and cried and he didn’t want to go to a busy city, [name of town] which is a moderate sized town but he did not want to go into those crowds of people and it took me half an hour of screaming to get him to get his shoes on, and I virtually had to force him out the door to get him there.
 
And it is the same when we try new activities, whether it is his drama club or his cubs that he has started. He still finds that really stressful. He says, “I don’t like the smell of the building. I just don’t want to go. I don’t know…” And even if he knows all the children there because they all go to his school, “I don’t like the oath of allegiance when we have to stand in a circle facing each other.” He hates that bit. He doesn’t like the feel of the toggle on his neck and he doesn’t like the smell of the building. And if something bad has happened on one week that is the one thing that he remembers. Of all the good stuff that has happened it is the one bad thing that plays on his mind and that stops him going back, so to get him to do these things is a really big struggle.  

Food and eating was a major cause of anxiety for a few of the children who were afraid of choking and so avoided anything chewy or lumpy. One mother, for example, described how her son “picks the edges of things, makes little piles out of the food and eventually eats something” because he was so scared of choking. Doing things like cutting the ends off chips made mealtimes a lengthy process. Another child stopped eating solid food altogether for months because of a similar fear.

 

Jacqui’s son Ben is a ‘born worrier’ while Joe is like Billy Whizz.

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Yes. Yes. I mean going out is very difficult because everything has to be planned and Ben has his own nature bless him I suppose, he is a born worrier as he gets older. So he worries about what will happen if? What will happen if a dog comes past and it scares me? What will happen if it is too loud? What will happen if a motor bike scares me? What will happen if I see something scary? You know what will happen if Joe runs off? And you can’t cover every eventuality so for Ben it is very hard to do anything. I mean it must be an awful [lot] harder to be Ben than to be anyone else in a lot of ways because he is always worrying and he doesn’t tell people at school any of this.
 
School is to learn and he won’t tell his teachers that he is fretting about something. And he won’t because that is not what you do with teachers. You only do those kind of things at home. So he can panic like mad and hold it all in and come in and collapse on the floor, white as a sheet, and cry his eyes out because somebody said something at school that upset him and just to negotiate a day out anywhere. I mean it is like organising a NATO operation really because Joe and Ben. I mean Joe has a diagnosis of autism and ADHD. But Joe is like Billy Whizz. You know he has to touch everything. Grab everything. Charge off backwards and forwards. You know go and speak to anyone at all whereas Ben walks along extremely... if you look at him when he’s walking he’s extremely scared with his ear muffs on and very, very slowly and to organise something to do that incorporates them all is very, very difficult.
 
I took them up the seafront on the rocks last week and there is rocks that were about this big and Joe whizzed all the way down, whined over the promenade, back again, extremely scary. He is like a monkey. He can get anywhere and did all this while Ben puffed and panted and talked about climbing onto a rock that was about this big and it took him about 30 minutes and then he has to get and he is like, “Joe I have been very, very brave.” [laughs] But meanwhile Joe has caused all sorts of havoc you talked to everyone that he shouldn’t have spoke to. Got himself soaked, covered in mud, everything and Ben is like, “I have got a little mark on my finger.” [laughs].

Some children had nightmares or night terrors which distressed them and their parents (see ‘Eating and sleeping’). Some needed to be physically reassured after waking up in the night and some slept with their parents. Some of the children internalised their fears while others became aggressive (see section on ‘Meltdowns’ below). One mother knew her son was anxious when he went to the toilet “ten times in half an hour”.

 
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Rachel's sons both have 'horrendous nightmares'.

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Age at interview: 42
Sex: Female
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With both of them their toileting was very, very difficult. It seems that was a frightening thing for them. So he still wets himself or he poohs himself, not Tom now, Matthew, but Thomas did at that age as well. It is very, very difficult and they have horrendous nightmares, screaming nightmares. Thomas will see things like dinosaurs coming to eat his face, monsters coming into his room, men coming into his room and killing his baby brother in front of him. Horrible. Matthew won’t tell me what his nightmares are but he just wakes up feeling frightened and he will be screaming in the early hours so one of us has to go and sleep with him or he comes into bed with us. When Tom was little one of us slept with him until he was about five, when we put them both in the same room and that seemed to help. With Matthew it is not every night but it is regularly that I go in and sleep with him because he has woken up feeling frightened and he can’t tell me what he is feeling frightened of.

A few parents said their grown-up children had self harmed at certain points in their lives, particularly during adolescence. One boy of 15 for example had started head banging at that point in his life, which his mother thought was caused by frustration.

Meltdowns
Some parents explained how behavioural difficulties could be caused by fear and anxiety. Some children could go into ‘meltdown’ and become aggressive because they found themselves in social situations they couldn't handle or understand. For example, one boy was terrified of children. “He didn’t understand them and he was scared of them. He would go and try and make friends, he would annoy them and then he would feel threatened and would whack them.” Other children could be destructive when they were angry.

The trigger for the meltdown could be something like an unexpected change in routine or something that had happened months before that the child had remembered. One couple talked about their son’s memory of events that had happened years earlier but which still upset him.

 

Nick and Vikki find their son’s tantrum’s difficult to control now he has grown older.

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Age at interview: 40
Sex: Male
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Vikki' Oh yes. I think he is quite aggressive at times isn’t he?
Nick' Yes. He will start screaming and shouting and telling you that you will do what he wants you to do. He will start kicking you or he will kick things around. You know he can be quite threatening in his words. From a very early age the classic thing he said was good we are going to go home. He very quickly picks up on things like that to actually turn them around. So if he doesn’t want to be somewhere he says, “Right, that’s it, I want to go home now.” And he will actually realise that if he kicks off then perhaps we will have to go home so we have to try and find something else to try and motivate him, but yes, if you imagine the screaming fit, a child having a tantrum. I want to do this. I want to do this. Now that is like it is like. Now with a 4-5 year old that is okay, but with quite a large 9 year old it is not the sort of thing you can just put down to terrible twos or something like that.
 
Have you found any ways of sort of managing that other than avoiding the situations in advance sort of thing?
 
Nick' Generally when he has got himself to the point of no return, explosion point, the best thing to do is to forcibly remove from the situation and there is very little you can do to get through once the red mist has come down. But no, if you are concentrating and you watch it very often you can pick up sort of six times out of ten you can pick up the warning signs that it is going to happen, a very often a hug and a sit down can calm the situation down, but it is not always practical. If you are trying to get somewhere because you need to be somewhere before something closes or perhaps Tom is upset because he wanted to do something and he can’t and you know sometimes you just can’t get in there and try and stop the situation and as soon as it actually starts you just have to physically remove him from the situation.
 

Helen describes her son’s meltdowns as “like a monster exploding”.

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Age at interview: 46
Sex: Female
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You say he goes into meltdown. Can you describe what you mean by that?
 
Sometimes it can be instant. He can be sat here now on the settee talking to you and I and then a thought will come into his head and it may be something that happened last week. It may be something that happened six months ago. And it will make him angry and then he will get angry and he might start thrashing, kicking his arms about, throwing things that is worst case scenario.
 
Sometimes you can see the gradual build up, you can see if he has had a particularly bad day because he will sulk and he will be moody and you know that sort of come seven eight o’clock at night you can really be in for it. So then it is trying to distract him and sometimes that works and sometimes it doesn’t. And then he can go up to his bedroom and refuse to go to bed, start throwing things, jumping on his bed, sort of banging on the ceiling. Its – it is like a monster exploding. And it is very unpleasant and twelve months ago he did get very physically violent where sometimes we did have to physically to restrain him and use time out and we did at our previous house sometimes have to lock him in his room and that was on recommendations from one of the specialists at the [hospital]. We didn’t like doing it but there were times when we had to do it for everybody’s safety, but fingers crossed we haven’t had to do that for a while now.
 

Jeanine's son became uncontrollably angry when he missed Dr Who because they were on holiday.

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Age at interview: 46
Sex: Female
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It is just the anger outbursts that are a problem. If I could find a way of controlling the anger outbursts my life would be so much easier. If I could find a way of getting the focus and the concentration my life would be so much easier. If anybody has got any clues on that, that would be great. And it is the unexpected that is the hardest. For example, when we were on holiday in Spain, he woke up in the middle of the night quite traumatised, very, very, very distressed. It was like the end of his world had happened. Why? Because he had missed Dr Who the previous night. He was crying his heart out, he was inconsolable for virtually an entire day, because he had never missed Dr Who ever. He had missed Dr Who and of course it was all my fault and I should never have allowed it to happen. And I was terrible. I was a terrible mum. I was everything under the sun, because I had caused him to miss Dr Who. 
 
He had had a great time on holiday going to all the theme parks and doing different things and going on the beach in Benidorm and he loved that but it was a terrible, terrible day with him being utterly distressed all day. There was nothing I could say or do that would cheer up. It was the very end of his world. He was hitting his sister. He was aggressive. He was aggressive with me, he was shouting, he was in one heck of a state. I couldn’t predict that. Maybe I should have been able to predict it. It was such an extreme reaction. It was totally distressing for his sister. She was in tears because she couldn’t handle it any more. I was distressed and upset about it. I didn’t know how to handle it. It was such an extreme reaction from him and may be I should have thought that that would happen, but I really didn’t know his devotion to Dr Who was so, so deep.
 
I know he always likes to watch it but I didn’t know not having that routine, that would throw him so completely and I came back from the holiday absolutely exhausted after that day and I don’t think we will ever, well I will check the Radio Times very diligently if ever I book another holiday [laughs] just to make sure we do not miss Dr Who because it really wasn’t worth the hassle So for every body who has got children who are obsessed with Dr Who just remember that bit, because it really isn’t worth it [laughs]. Just make sure you book it mid week and not on a Saturday night. Okay.

Parents found managing their children’s meltdowns difficult because they were hard to predict. They would often have to physically restrain their children which became harder as the children grew bigger. One boy was on a very low dose of medication to control his behaviour and while this worked quite effectively, he was still unpredictable (see ‘Medical and dietary interventions’). Other children’s behaviour improved as they grew older and learnt to manage everyday life more effectively (see ‘Positive changes over time’).

Sensory issues
People with autism may be sensitive to sight, sound, smell, touch or taste. Many children were extremely sensitive to all sorts of loud sounds including alarm bells, hoovers, lawn mowers, and background sounds from radio and the TV all of which could overwhelm or distract them. One child wore earmuffs constantly to reduce the level of sound he could hear. Wearing special lenses (known as Irlen lenses) helps Kirsten's son to focus his vision.

 

Kirsten’s son wears coloured glasses to help his concentration.

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Age at interview: 34
Sex: Female
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Andrew is completely opposite. He has super balance he can walk along the back of the couch and balance on it and balance on the narrowest kerb and he will walk on that. He rarely falls. But this is for his reading concentration and it should help with his fine motor skills as well. And virtually his eyes are just all over the place. Andrew’s eyes don’t settle on something and concentrate. He is just totally… but that is a sensory thing again. It takes him too much sensory input and he can’t focus on what is important and see what is best and see what he needs to be looking at.
 
So we went to [doctor] – now [doctor] is from [city] but he has recently, he has sort of opened a practice in … near, so he is part of the … he is still part of the week in [city] and part of the week in [town]. We have been looking for coloured glasses for about two years …we saw the programme on the Jackson family and they went to this chap [doctor] for coloured glasses and it took me two years to hunt down where I could possibly … we tried different appointments, we went to [town] and everything, no he doesn’t need that if he can already read as a five year old, he doesn’t need coloured glasses and things. So we eventually tracked down [doctor] who was opening a new practice in [town] which is half an hour away so that was good, so we have been several times to him. Once Andrew is a bit older he can get a more complex test, a more specific test and get the tint more accurate but because it just happens that they are both wearing blue although Rachel’s is a different tint. A lot of people think that is a bit funny they have both got blue and just think they are sunglasses.  “What are you wearing your sunglasses for, here?” And things like that but that have made a difference in concentration and the school feels that as well, that his reading and concentration is better.

A few children were hyposensitive (had low sensitivity) to pain. As one mother said about her son, “He had no sense of pain so he had no sense of danger; he was into fires, he was into gas cookers”. Other children were hypersensitive (had a high sensitivity) to pain and could not bear the feel of different textures on their skin. As one mother said, clothes had to be “soft, no zips and no hard waistbands”. Some children would not wear labels in clothes or socks and one child hadn't worn shoes for three years.

 
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Jacqui has to cut the label off clothes for Ben when she buys them in the shop.

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And you know, Ben is extremely particular, you know about. To go shopping with him I take him in his wheelchair with his ear muffs on and he goes like ugh and then touches something else, and he goes, “That is minging,” And touches something else. “Merrrr…” And eventually if I get something he goes, “Maybe. Maybe. Maybe not.” So then if I get as far as that I get it out and then he will go, “Okay. I will try it.” You know so I get as far as trying it against him and then hold it against his face and he will say, like, “No, like it's minging.” And if he decides he will have something then I have to cut the label out there and then. He won’t let me bring it home. I have got to take it out. You know, they must think I am a bit mad in the shop. But to be honest it saves on washing because he just a wears a school uniform or a track suit if we go out. And that is it. That is all you need isn’t it.
 
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Nicole has hypersensitive hearing which can cause her anxiety.

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Age at interview: 39
Sex: Female
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She has got a tested IQ of 128 which is bordering on superior intelligence but she also has hypersensitive hearing. She can hear a conversation from three rooms always so a fire bell going off can cause her to behave very strangely and if she gets angry or anxious then her behaviour does alter but it is not something that she has got any control over.

Having nails or hair cut was also difficult for some children. The smell of food in restaurants was too strong for one boy while another boy disliked the “bubbly feeling” of toothpaste and his mother had got some bicarbonate of soda as it was better than nothing.

Several parents talked about how their children ‘stimmed’ (repetitive stereotypical behaviour) this could include: flapping their hands, touching things, sucking things, spinning round in circles or constantly turning lights on and off. Stimming could be a mechanism to calm the children if they were anxious, it could be to tune out something the child couldn't cope with at a particular time, it could be related to a sensory fascination with an object or just for want of being able to think of anything else to do. One mother described how her son had what he called “habits”, one of which was constantly licking his fingers and then touching things.

Some children didn't like certain food textures or different colours of food (see ‘Eating and sleeping’) and one boy used people’s shape, colours and smell to know how they were feeling and could smell his mother’s emotions.

Reducing anxiety
Some parents were highly adept at supporting their children with managing their fears, anxieties and stress. They tried to understand how their children thought about things, preparing the children well in advance of different activities and trying to pre-empt any potentially difficult situations. Some parents used wall planners and charts so that their children knew what they would be doing each day and followed this rigidly. Other parents tried not to become too routine-bound but didn't always succeed.

 
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Nikki and Mark have tried not to create routines for Tyler.

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Age at interview: 32
Sex: Male
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We don’t take him. We don’t restrict ourselves from doing anything because of Tyler’s autism. He has to adapt. If he finds it difficult we help him do that, but we won’t set the routine. So for example when it is school, we bath them on you know regular nights, but when it is school holidays they might be bathed first thing in the morning instead of at night. We don’t give them the same things to eat all the time. We don’t have the same times for eating all the time. Sometimes we might go out for dinner. And we have always done that. We have made sure that our routine is constantly changing. Because I don’t want to get into a situation with Tyler where you know it is 6 o’clock and dinner is not on the table so he goes into meltdown. We just won’t have that. So we do all sorts of different things to test him I suppose.

One mother fetched her son home early from school to miss the crowds of children at home time, while another found taking her son out in the car calmed him down. Reducing the number of people visiting the house was another strategy some parents used. One boy, for example, had a sign on his door allowing only one person at a time into his room. His mother said he would prefer only one person in the house at a time. Parents also changed their expectations for their children in order to help them manage their anxieties. It was no use expecting them to enjoy children’s parties or ride a bicycle if they couldn't cope with these activities.

 

Nuala describes how they have elaborate plans for everything and “simply don’t change the plan”.

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Age at interview: 43
Sex: Female
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It does mean that you can’t, you have to think ahead very hard if you want to do something. The other thing that will set tantrums off which I forgot, is the changes, sudden changes of routine. I had forgotten because we just don’t do it. We have very elaborate plans for everything and we have a big wall chart saying what is going to happen in the week and we simply don’t change the plan.
 
When he was younger and we suddenly decided that we would like to do something, and go out for the day that is when a tantrum would happen, because we would change the plan and he was very upset. So… really we don’t, we don’t change the plan, I mean it is that simple. We just don’t. It doesn’t matter if somebody in the house suddenly wants to do something. We have to stick to what was agreed, and if there is something, you know we have to go out or something or there is something he doesn’t like, like a babysitter coming, which is a big negative, he does need a lot of preparation and now with a lot of preparation and support he can get through a bad experience. 
 
When he was younger, he couldn’t but now he can, actually get ready but you can’t spring it on him, you can’t say, “Well tonight mummy and daddy are going to leave you with a babysitter.” That won’t work, that would definitely be a bad thing. So a lot of it is avoidance and preparation and then just a judicial amount of avoiding and helping and distracting at the right moments.
 

Jane describes how she tries to help her son feel balanced and learn to recognise his stress.

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Age at interview: 47
Sex: Female
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And I don’t know whether, whether he is going to maintain his emotional stability and be in a position… He gets very, very stressed over exams. I don’t know whether his progress and his academic achievement will remain on the level that it is or whether he is going to develop bipolar disorder for example. I know what the relationships are with mental health, particularly anxiety and I can see that he has those, so what I am trying to do is help him feel balanced and able to recognize his own stress so that he can take appropriate measures for himself and to speak to people early so that it is not too late. And I don’t know how much I can do in that line. I can only hope that he learns to recognize, to do, and then do something. That is for me to sit and watch on.
Some parents talked about how the anxieties changed over time. They could help their children learn to manage a particular anxiety and then a new anxiety would come along. Several parents described how their children became less anxious as they grew older.

Fears, anxieties and sensory issues were an important part of daily life for most of the children; they are common among people on the autism spectrum. While these could be challenging for the child/ren and her/his family, many families managed them successfully. Difficulties in communication are also a characteristic of autism - see ‘Communication; understandings’.


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Last reviewed July 2017.

Last updated November 2010.

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