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Parents of children on the Autism Spectrum

Effect on parents: feeling like a bad parent

Many parents had felt, particularly before they knew the diagnosis and understood the nature of autism, that they were seen by others, or maybe actually were, bad parents (see ‘Getting the Diagnosis; assessment and being told’ and ‘Feelings about diagnosis’). Some parents had been persuaded to go on parenting courses, and even after the diagnosis some still believed that they were somehow at fault, partly because children on the autism spectrum have no recognisable physical signs and some people didn't really believe that the children were on the autism spectrum. One couple described being labelled as “totally inadequate parents” as very hurtful.

Some parents found the invisibility of autism difficult and the lack of understanding and awareness of other people and this is discussed further in ‘Going out’. As one mother said, “When you go to public places and to parties and things, people sort of look, you know and just that hurts sometimes”.

 

Daniel feels has to constantly tell people about autism because they think he is bringing his son...

Daniel feels has to constantly tell people about autism because they think he is bringing his son...

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Or the fact that he can’t socialise, they think it is because you haven’t let him mix with a large group of children. “Let him go and play football with the kids.” He can’t play football, he will just get beaten up and bullied. He won’t be able to play football with kids in the park. He can’t do that. But people think that he hasn’t got a handicap, all he has got is a parent that doesn’t know how to bring him up. And it is the old MSBP Munchausen’s Syndrome by proxy which has now been discredited. But the authorities still use it, they now call it emotional abuse but they mean Munchausen’s Syndrome by proxy but they are not allowed to use that word any more because it doesn’t exist apparently. But inadvertently and without knowing that they’re doing it at all, almost everyone you meet is accusing you of MSBP, it doesn’t matter what you do. “He is only like that because you are doing this wrong.” You know, and this is something I hear that is common among everyone I have spoken to anyway, the parents with autistic children, that you have to confront that all the time. You are constantly telling people, “Actually my son is autistic.” 
 
And then you have then got the next problem. They have heard the word, they don’t know what it means. So then you have to explain what autism is. It is such an incredibly complex condition that even the so called experts haven’t got the first idea what it really means to be autistic, or to have autism. They can list criteria for diagnosis but they haven’t got a clue what it is to have it, or to live with it.
 

Jane worries that her son is doubly disadvantaged because he is 'mixed race' and has autism.

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Jane worries that her son is doubly disadvantaged because he is 'mixed race' and has autism.

Age at interview: 26
Sex: Male
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Jane' One of my biggest worries about [name] for the future, is he is sort of learning to adapt and learning to live in his environment, and I really worry because he is mixed race, because research has shown that black boys don’t do as well in school. So adding the autism onto it I sometimes feel like he has failed before he has even begun. And it sounds quite dramatic that, but it is other things that I worry about for the future like social situations and living in England and living, we don’t live around a black community. It is really difficult to teach him things about his heritage or where he, you know, where his Dad comes from, and where I come from, and to get him to understand that, and we just, sometimes I think about it, and I don’t know, there is nobody can tell me at this age and this many months he is going to ask that question, and with my daughter we have discussed it, and we have discussed it quite a lot and she is four, but for him, it might never come, but then it might come.
 
Jane' And I feel, I feel like it is a double disadvantage in some terms, because him being a minority in his race, and then having the autism on top of that, sometimes I feel like it is going to hinder his progress.
 
Do have thoughts like that?
 
Dan' No.
 
Can you be, is that a concern of yours, is there anything you can think of that possibly might help or any sort …?
 
Jane' Not really. It is just that research has shown, research with the National Autistic Society and other things, other researches have looked into this issue. It is not a widely researched issue but it has shown that, you know, other issues regarding black boys going to school that they are sixteen times more likely to be excluded, you know, their academic performance. I know that he probably won’t get involved in sort of like the gang culture and things like that, because he will never have that level of comprehension but it is still, I want him to be accepted. I want him to be accepted but it is really difficult. I want him to understand who he is but it is really difficult because at the moment he has no comprehension of it at all. So he doesn’t, you know, if anybody taunted him for anything he wouldn’t understand and that is a concern as well, because they are going to school now, they are going to a mixed school, but they are still minority pupils, and you know, if anybody said anything to him in the playground he just wouldn’t have a clue what they were saying and that is a good thing as well. But he can’t stick up for himself, because he doesn’t understand. He doesn’t understand what they are going to say. And you don’t want him to come home and think something that they have said and think it is true without us being able to tell him, what is the truth and what is right and what is wrong. So that is a big concern.
 

Diana and her husband went to behaviour therapy after being told that 'academic families have no...

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Diana and her husband went to behaviour therapy after being told that 'academic families have no...

Age at interview: 66
Sex: Female
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But we did see an educational psychologist and various other psychologists and they did say yes she has got difficulty with dyslexia, dyspraxia all sorts of things and somebody came to the house and said, “What does your husband do?” And he was, [name] was an academic, and they said, “Oh you know, you academic families have no idea of how to talk to children.” And you know it was all our fault. And they were asking questions like, you know, “Could she have been abused by my husband?” Absolutely ridiculous, I got so cross you know. And whatever it was, it was our fault and we had to go to behaviour therapy and all this sort of thing, which was, you know, total nonsense.
 

Mary-Ann explains the tension she feels between not wanting people to judge her as a bad parent...

Mary-Ann explains the tension she feels between not wanting people to judge her as a bad parent...

Age at interview: 32
Sex: Female
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And yes, and so I do upset people because it is quite hard, because on the one hand you do want your child to listen to other people, but on the other hand, you want other people to understand it from their point of view and it is very hard to do that, you see, and you don’t want, you know, when you are out in public and the child does something that you know is not really socially acceptable, you don’t want people to think that you think it is socially acceptable, but at the same time, you know that your child can’t help it. So you kind of have a battle with yourself too, I think, you know because you don’t want… I feel that people are judging me and his behaviour and I as a person, you don’t want to be judged as a bad parent, or a bad mother or someone who doesn’t have good standards you know. 
 
And so I tried taking Arthur to karate lessons and I mean may be if someone else had taken him, may be he would have stuck with it but I couldn’t handle it because he couldn’t, you know, in karate you have got to stand still and you have got to follow the moves and he couldn’t stand still in between so he had nearly had the instructor going, “Arthur stand still.” And I am going, “Well I know he can’t.” You know, like I said it is kind of a real battle in your own mind because you know you are like, yes I would like him to stand still as well, you know, but I know he can’t although it probably didn’t bother him that he kept saying it, because he would just carry on anyway. It bothered me, you know, so yes, it can be really hard [laughs].
 

A professional told Jacqui that if he had Luke for three months he could stop him behaving in the...

A professional told Jacqui that if he had Luke for three months he could stop him behaving in the...

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And I think a lot of the time the family environment is where a lot of the, or the immediate family is where a lot of parents struggle with because not only are you dealing with this thing that is thrown at you - not the child but you know the whole autism way of life - but you have also got quite often a lot of disbelief or accusation or it is something to do with the way you brought them up, from professionals and from family members and if you did something differently.
 
I had a professional that used to say to me quite regularly, “Give him to me for three months and I would stop him doing that.” And I was dying to say, “Well go on then. Try it.” You know it quite made me laugh because it is this perception that you could stop it and you can’t. I mean they are just who they are and you do what you can but I think a lot of time really don’t want to know that their daughter has got this child that may be if he is functioning at the age of two years old when they are fourteen or is eighteen years old and has still not done any schooling for ten years or that you know. It is things that really, it is something to be shoved under the carpet still, a lot of the time and that is certainly the case in an awful lot of parents that I speak to.
 

Karen feels judged to be the world's worst parent and talks about the effect of her experiences on her life.

Karen feels judged to be the world's worst parent and talks about the effect of her experiences on her life.

Age at interview: 39
Sex: Female
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[Laughs] I feel I have been treated like a criminal. I am treated with great amount of disrespect by the education profession. I have had to give up my career. I am actually a telecommunications engineer by trade and had a very good career. I have had to give up work. I am not able to work any more. I haven’t been able to sustain a relationship. Financially I’m about to lose the house because I am not able to work and the benefits system is a maze of difficulties and if you have got a mortgage it is very hard so I haven’t been able to pay the mortgage this month. I have problems controlling my weight, because the stress means that I comfort eat. I am on antidepressants and basically I had a baby and it has completely and utterly affected every area of my life.
 
You know a lot of the time I feel I am judged to be the world’s worst parent. It has actually caused a breakdown of my family relationships. My mother and I don’t speak any more because she doesn’t believe in Asperger syndrome. I am just a weak parent who doesn’t discipline her child properly, even though my younger daughter doesn’t have any of the behavioural difficulties, Nicole does, at all. And she is parented in exactly the same way. In fact her parenting is probably a little less strict then Nicole’s because I have to be firm with Nicole and very rigid. And apply the rules very evenly and fairly, you know we all have a timetable that is kept on the wall so every, you know all day, every day, we are all timetabled so Nicole knows what is happening and where we are all are.
 
So really having a child with Asperger syndrome has actually caused me really to lose everything. I have got friends who won’t come and visit, who we are not allowed to go and visit because they don’t like Nicole’s behaviour. They feel she is rude and ill mannered. So yes [laughs].

One mother still sometimes wondered if she could have prevented something from happening, twenty years after her daughter was born. Another parent described how, “I mean I felt bad enough as it was because I didn’t know how to handle him, but then I thought ‘Well how would I know how to handle him? Babies aren’t born with instruction books and I didn’t know anyone with a child with Asperger's”.

Two mothers had been suspected by health professionals of making up their children’s symptoms, this is also known as 'Munchhausen by Proxy'. This was distressing; as one mother said, “Why on earth would I say there was something wrong if there wasn’t?... I could not believe it”. A few single or divorced parents felt that educational or health professionals put their children’s difficulties down to their family situation and this, again, was upsetting. One single father felt that people felt that he was not able to bring his son up properly because he was a man.

Feeling blamed and not listened to was hard for parents who thought that their real concerns were being dismissed and their expertise as parents ignored. One mother commented “I think you have to trust a mother’s instinct… various professionals that have been speech and language therapists for a long, long time failed to spot what I think were obvious signs”.

 

Caron was not listened to for so long and feels let down.

Caron was not listened to for so long and feels let down.

Age at interview: 24
Sex: Female
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I feel like I was let down. That is what I do. I do feel like I was let down. I feel like they should have listened to me more or maybe I should have been able to put myself across more articulately or I don’t know, maybe I should have done research on it then and wrote comparisons, wrote like a diary for [son] and taken it to the doctors, but then I don’t even know if the doctor would have listened to that anyway. So it wasn’t until you know, the health visitor came round to help me with breastfeeding with [younger brother] and she saw [son] and she said to me you know, “Have you got a referral for him yet?” And I was like, “No, I am still trying but nobody will listen to me.” And then she was like, “Well next time you go to [doctor], next time you go to the doctor, just tell them that I think that there is something.” And then that is what I did and then there was a lot more willing to listen as soon as I said “The health visitor thinks…” blah blah blah as well. You know, although it shouldn’t be like that, they should listen to the parents. But you know if that is what you have to do, that is what you have to do.

Making comparisons
Being around other children who were not on the spectrum could be difficult. As one mother said, “You look round at another fifteen year old that is off getting girlfriends and I am still trying to wash his face and get rid of his dummy. It can be disheartening”. Another said:

“I get quite anxious sometimes and fearful that you know I see my friends and the children in my family, you know doing all the things I should be doing and that hurt sometimes. You know when you go to a friend’s and, you know, the child is talking away to you and playing and you know, Georgia is sort of in the back garden and chasing the dog around the garden. And … that is quite hard.”

 

Vikki describes how “it breaks her heart” to see her son playing with children much younger than...

Vikki describes how “it breaks her heart” to see her son playing with children much younger than...

Age at interview: 40
Sex: Male
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I think also it is very difficult for me, taking the boys anywhere where there is cousins because you have got the comparison, say for example they have got cousins in Devon who are older than them and to be honest with you as far as I am concerned that is okay because Peter being the youngest is the youngest but when we go up to visit Nick’s brother and his children, Peter is one of the older ones, but in fact he manifests as the younger one and it breaks my heart at times to see him playing with a child five years younger than him, who in fact shows more maturity then he does and in fact the, [cousin] his cousin, who he is one year older then… gravitates towards Tom because he is bored, can’t see Peter’s logic, can’t see why he is doing these things, and you are thinking well if only. You know he shouldn’t be doing that. And yet, I think it makes me more apprehensive visiting them just because of that comparison.

Last reviewed July 2017.

Last updated November 2010.

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