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Parents of children on the Autism Spectrum

Growing up

Transition periods, such as puberty or transition to adulthood, can introduce new challenges to many children, young people and families. The parents we interviewed discussed the anticipation of these challenges or what happened when their children experienced these transitions.

Puberty
Most parents whose children had gone through puberty said that it was straightforward. As one mother said about her son; “He went through puberty smoothly. He is very quiet, very private.” Another mother said that “sexuality is no different in Asperger's than in anybody else. They get the same urges, and the same desires. The fact that they are autistic makes no difference. The difference is how they handle it.” Parents of daughters on the spectrum talked about how their children found periods difficult to cope with; in some cases this was linked to hygiene issues (see 'Self help skills').

 

Tracy describes periods as “a bit of a nightmare” for her daughter and she still gets upset if...

Tracy describes periods as “a bit of a nightmare” for her daughter and she still gets upset if...

Age at interview: 40
Sex: Female
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Did you have any difficulties with Nicola going through puberty?
 
Hm. It is not a thing that was very easy. She didn’t embrace it. Periods were a bit of a nightmare. She didn’t understand it that was hard to get her to get to grips with that. It took a few months. Yes, no, it was just a bit of a … even now she doesn’t, this is where the sort of regimented side comes in because she thinks she should bleed the same day every month and she doesn’t take the factor in that some months have got four weeks, some months have five weeks, and we can have a bit of hysteria if the period doesn’t happen on that day of that month and to the extent of ‘oh my god I might be dying’ [laughs].
 
We have had that said a couple of times because it hasn’t… the function hasn’t occurred when it should and the body changes she didn’t like very much she sort of didn’t like to change, but we had to sit down and explain to her that it is not her, that everybody does it, it happens to everyone… it took a long time but she did get there in the end but it wasn’t a good process.

Most parents with younger children were worried about how puberty would affect their child/ren. They thought that their children would not cope well with the emotional and physical changes; some worried that their child might behave inappropriately.

 

Sandy describes puberty as “a fuzzy old area” and how she does not know how her son will cope...

Sandy describes puberty as “a fuzzy old area” and how she does not know how her son will cope...

Age at interview: 38
Sex: Female
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Yeah. I do. Yeah I do very much. And I think I wonder how about how it is going to affect him. Will I be able to cope with him when he gets much bigger, because he’s very strong now. And it is if he is really having a big hissy fit it’s all I can do now to try and control him, or to get him to calm down. I don’t suppose control him is the right phrase, but to get him to calm down and get him to listen to me. I do worry about I suppose all aspects of the future. Like where will he go to school? Where will he live? Will he end up in residential care? It is already on my … I know it might happen, it might not. It might happen with both of them. Yes the puberty thing. I don’t know how he is going to change when he goes through it I suppose.
 
I suppose it will be like everything else. Take it as it happens. And just see what happens, but I know he is very attached to a young girl at school and I do think… I hope he doesn’t when he goes through the puberty thing, or going through it, attach himself to the wrong person and maybe behave inappropriately as well. Obviously that is a cause for concern but then I don’t know I suppose at the moment what is going to happen. So, I don’t know. It is such a fuzzy old area isn’t it? We just don’t know how he is going, how he’s going to be.
 

Liz’s son has had his first sex education lesson at school and she has explained to him that...

Liz’s son has had his first sex education lesson at school and she has explained to him that...

Age at interview: 45
Sex: Female
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Have you got concerns about your son reaching puberty?
 
Oh yes. He has just had, last week he had his first sexual lesson at school so he has taken it on board and I have tried to explain to him that they are not the sort of things that you talk in public, at the wrong time, so so far we don’t know how he has taken that on board, but yes, I mean because of the communications again. Because it was the school that did the sexual communication thing, he might have taken it on board a little bit better but if I tried to approach him here it would be like no, he wouldn’t want to talk about things like that. Or he will be very silly and he was being silly in the car, but I just kept saying, “You know Jonas you can’t go up to a person and just talk about these things at the wrong time.” I said, “You can talk about them at home, you can talk about them to a person if they are specifically talking to you about it, but not, you know blurt it out in the middle of the playground,” which he would do and things like that.
 
So I am just beginning to enter that stage so I can’t really tell you too much about it, because I haven’t really experienced it yet, but I am dreading it in a way, especially because these kids are very vulnerable. And other children pick up on this and they kind of get them to do the being silly thing and my son is always the first in the list, they all say to him oh do that ADHD thing you do, or you know, go and do this and he will go and do it, because he wants to be part of the group and be accepted. So they are very vulnerable in that respect. All children are vulnerable but children with these sort of issues are ten times more so.

Another mother described how she had got a work book from the National Autistic Society and she will go through that with her son. A few mothers commented along the lines of “that is really where a dad has got to come in and do the fatherly bit”.

 

Rachel thinks her son will have a hard time with puberty because he will be bothered by bodily...

Rachel thinks her son will have a hard time with puberty because he will be bothered by bodily...

Age at interview: 42
Sex: Female
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Is there anything on your mind about the boys going through puberty?
 
Yes. It is the girl thing. It is. It is the girl thing and all that trauma of does she like me, or does she not, and this pressure at eight or nine, have you got a girlfriend or a boyfriend and that is at eight or nine. So that is ridiculous. So imagine what it is like. And then his body will be changing and he will be getting wet dreams and he will be doing all these physical things you have to explain and Tom gets so embarrassed by himself and by his body and by the things that happen to him. He is going to find all those changes, and changes in his voice, all of that very stressful and then that is before you get into relationships with girls.
 
And as you get older the kind of friendships you have aren’t just playing beef and stick in the mud any more are they? They are discussing relationships and Tom is going to be at a disadvantage. I am worried. I am worried about him going into adolescence. I think that is going to be hard time for him.
 
Have you been given any information or …?
 
No. No. Not yet. But I have just joined [name of support group] which is the Autistic Asperger's Support Group which I need to send the forms off actually, so … and I do think that is a good resource. I think they will be able to advise because they do a lot with adolescence and young people with Asperger's. I a hoping I will get some more advice from them, but I am suspecting we will just have to go through it and see and hope he is all right at the end of it. I mean he is interested in animals and I am hoping to may be get him to do some voluntary work in a local zoo and things like that and give him some interests because I don’t fancy him out on the streets. I think he is going to be too vulnerable. There are children that go up and play on the estate and there is one or two children I wouldn’t trust him with. There are one or two children that just wind him up and get him to do things. So I will have to let him go but ….
 

Bobbi thinks her son will be very worried about puberty, particularly after he found having...

Bobbi thinks her son will be very worried about puberty, particularly after he found having...

Age at interview: 38
Sex: Female
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It is a bit early for you to think about puberty?
 
Oh scary. Oh my God [laughs]. My eight-year-old I think is just hitting hormones and no I am scared. I am actually worried about puberty. I am actually worried yes, because years ago he said to me that he didn’t want to grow up. He liked staying the size he was. He was worried about getting bigger, you know, and we have had glimpses of that every once in a while where he is sort of proud of the fact… we have a chart on our wall that how much he is growing and he is proud of the fact that he is getting bigger but then he is also scared of the fact that he is getting bigger because that means change, and therefore change is this whole big open thing, that is a little bit scary to him. So I am actually worried about puberty for him.
 
Because I am worried that number one, he won’t… I try to… both my children has had sex education that is appropriate for their age right now. Charlie does know where babies come from. He does understand the basics, the very basics of the whole idea. But I am worried for him and his confidence when his body changes. I do think it is going to be an issue for him and I do think it is going to worry him. And I think he will probably become quiet, because when he is worried about things becomes slightly quiet too and then I really know something is wrong. Do you know what I mean? For example he just came out with chickenpox recently. When they were coming out he was trying to push back in, you know, he did not like the fact... And then when we said to him it is chickenpox that is happening. He got it a year ago and now he has got it even worse. So he is getting over it now. But while he had it, it was ‘no I don’t have chickenpox. A lot of bees came in that night and sung me instead’. Because the idea of chickenpox was oh, oh, this whole big thing from what he heard.
 
So that worries me too when, you know, all of his peers are starting to change and they are going to start to mature, is that going to become this, you know what I mean, this whole big thing for him and is he going to fear it even more. Thankfully we are not there and I have thankfully I will have the experience of Jack going through it first which is sounds bizarre but I am actually really thankful for that, because like I said, I don’t know boys. Boys are foreign to me. So this whole thing will be new to me. So having that … knowing that obviously both children are radically different, and all children are different, but having the experience of going through it once first will probably help me prepare Charlie a little bit more and I am hoping to prepare him but I am scared too, because I am a mum and I don’t know if little boys don’t want their mummies to be near them at that time, and you know am I going to have to look to my husband more to lead at that time, you know. So yes, I do think about it already. I really do. 

One mother said of her two sons who are both on the spectrum: “I know he does like one particular girl but it’s all very secret squirrel nonsense … whereas his brother has had about three that he has chucked already, you know”. Another mother said that her son was a good looking boy and “whoever he falls for, I hope it will be reciprocated…I just hope they will be patient”.

Transition to adulthood
For those parents whose children had made the transition to adulthood, the experience was largely negative. They talked about support dropping off when the children became adults and how fighting for services and support for their children continued into adulthood. Some parents described how there has been little focus on what will happen to the children on the spectrum when they grow up and this has left their children “floundering”.

 

Tracy says it is scary that there is no structure in place to support her daughter.

Tracy says it is scary that there is no structure in place to support her daughter.

Age at interview: 40
Sex: Female
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She has had a post college assessment but then the system has just stopped, we have not received anything else to say, well the next step for Nicola is, or …Everything that we have achieved and that she is going on to, is what I have done and found out and sorted for her. But there is no, from what I can see there is not a very good structure in place with local councils and government for adult children … adult children sorry, adult people with learning disabilities or autism or anything of that nature. They seem to be sort of concentrating on the 5-16 or 5-19. That is fantastic. That is really, really good work done, but it goes on beyond that.
 
When they leave education they do still need that help and that guidance, even more so, I think, because there is less structure for them. It is a minefield, you know, you are treading… you are going blind every step of the way because you just don’t know, and they deserve the same quality of life as the next person and they don’t get it. They are changing the employment laws and they are doing a few things, just little bits to make what they think is going to make a difference but it is a very, very slow process.
 
And I worry now more so than when she was in education. Oh well she is still in education, but we have only got two or three months left. When that process is finished, that in my opinion, then comes the scary part for me, for her, for everybody in the family, because we don’t know what support there is or what will be available to her. They are not so hot on giving the information for adults with learning difficulties.
 

Jacqui says “it doesn’t stop when you get to 16; they go into adult services of which there are...

Jacqui says “it doesn’t stop when you get to 16; they go into adult services of which there are...

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And it doesn’t stop when you get to 16. You don’t lose the ADHD and they don’t lose their autism. They go on into adult services of which there are very few and it carries on just the same. Technically now I have only got two children. I haven’t I have got seven plus an extra two on the spectrum that are boyfriend and girlfriend of two of my kids but not accordingly to any system because they are all fully functioning adults by now that are going out and going to work but they can’t. Nor can they go on to further educations. So, that seems to be the beginning of the next battle in a way is educating people and finding ways for people to be able to help ease them into employment and employers to become more aware and more friendly and find out proper roles for people on the spectrum because they are brilliant in their own ways at their own things.
 
But if you shuffle Luke into a fast… say McDonalds or something, you know, it takes him five minutes to process something. You know anything that you said, you know, he wouldn’t last ten minutes because anything that is fast moving he can’t do and it is really a case of finding the right employer and the right position for any of these people on the spectrum and then we can all get the best of them. That is it. Full stop.

Of the parents we interviewed whose children were aged 16 and over, three children were at colleges (either specialist colleges or colleges of further education), four were living at home and not working (one of whom was in the process of arranging appropriate support to start a university course) and one person was living independently in a flat close to her parents' home but had no paid job.

 

Diana describes the process of her daughter moving into her own flat.

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Diana describes the process of her daughter moving into her own flat.

Age at interview: 66
Sex: Female
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Well then when she came back home again, you know, it just, it just was just so wearing that we thought, you know I thought she had got to really kind of start standing on her own two feet. So I got her into the YMCA in [town] initially and there was, you know, a lot going on there. There were sort of exercise classes and all these sort of things that she could join in with and that was great, but that was for a year she was able to do that. And then she became a lodger locally with somebody and, you know, they found her a bit too much. You know it was a bed sitting room, you know and so then I thought well she is probably ready now to have her own place. So we bought somewhere and she, you know, would get paid rent by the DHSS which works fine and we are trying to get her to manage her own finances. She pays her own bills and things. She usually runs out of money by the end of the week [laughs] because I mean she is nuts about collecting little Royal Doulton figures, its never cheap things you know [laughs], but I think well you know, if she spends her money on that it is probably better than spending it on alcohol and you know things from Top Shop. So that is her one extravagance, is that she just starts on a collection of I don’t know, Snow White and the Seven Dwarfs or something and she has got to have every one you know and buys them on the internet and … [laughs] So anyway that is why she runs out of money.
 
So it has been quite successful then the flat?
 
Yes. Yes. It has. I mean, you know, as long as we don’t expect her perhaps to live the same way that… though she is not too bad at all. You know, she will sort of ring up and say, “Ooh my vacuum doesn’t work, can you come down with yours,” you know. When I sort of pop in, you know, once a week or so, and say, “Are you going to vacuum your floor?” or something. And she will sort of ring and say, “Can’t get my vacuum to work. Can you bring yours down?” And of course it means I do it, you know [laughs].
 
And she comes back three days a week or four days? Is that very regular? Or is it …?
 
Well she always comes home Friday mornings and goes back Monday evenings you know. She stays as long as she can. Sometimes I have to shoo her out of it. So … And she likes to come home. The girl in the local shop is very good and she you know, does paper rounds for her and runs errands for her and things like that and [name] takes her out for lunch on a Saturday and you know, takes her down shopping in The Mall and things like that. So she likes to come home and spend time with [name]. So that is really good.

Many parents whose children were younger worried about the future ( see ‘Thinking ahead’ and ‘Effect on parents; worrying about the future’).

We have interviewed a number of adults who are on the autism spectrum and their experiences are outlined in our section Life on the Autism Spectrum.

 

Last reviewed July 2017.

Last updated November 2010.

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