Sub-theme 1: Lack of understanding

This sub-theme aims to capture the way mothers feel misunderstood by others. Lack of understanding can come from different sources, but what was common to all the mothers’ experience was that they feel that other people could not understand what autism was and what it meant to be a mother who parents a child diagnosed with autism. This left mothers feeling isolated and alienated from their environment.

Mothers whose children had behavioural difficulties talked about the lack of public understanding and awareness regarding autism. Mothers seemed to be angry when they talked about it. Nicole said:

‘At times I wish the genuine awareness of his condition increases because it’s something all over the UK, also anywhere in the world, and people to try to understand that it is a severe mental disability, and with George... if they can only understand what autism is’ (5.14-17)

Laura, who had one son with physical disabilities, compared public responses and reactions to her sons’ disabilities:

‘His brother has physical difficulties and medical problems and it is much easier for people to understand, the wheelchair is a symbol, yes he has disabilities but he is neurologically typical and people are concerned about how you are coping and that’s easy, autism is just this brick wall that nobody can get pass’ (12.11)

Rosie also believed that the lack of understanding and awareness about autism resulted from the public fear regarding mental health issues:

‘It’s not worth describing to people that they have autism because the understanding isn’t there, if you say my son is disabled because he is paralysed, they are like Oh God, that must be awful, you know, if you say my child has schizophrenia, or depression, or anything mentally... it has very much to do with mental health, people are scared’ (9.11-15)

Paulina’s son did not have behavioural difficulties, and as she said, he was able to behave appropriately in public places. However, she was also concerned about her son being labelled or discriminated due to the lack of public awareness about autism:

‘People who haven’t come across autism before, would think Oh what’s that, you know, he must be like this, he must be like that, and you know, or pity, I don’t want that’(5.3-5).

Mothers whose sons had behavioural difficulties also talked about the lack of awareness regarding autism among professionals. As Nicole and Laura said:

‘So there is so much luck of awareness about this condition even among professionals (...) So how can I expect other people who don’t know anything about autism to empathise when the so called professionals discriminate on a child because of his condition, the minute they hear autism, they think it’s an alien condition. That’s the feeling that I got, the minute they hear autism it’s like, Oh my God, what kind of thing is this, are you from Mars?’ (9.7-9)

‘And to be honest I have found very few doctors that can understand it, with his paediatrician I had a couple of occasions that I thought Oh my God she does not get it’ (12.16)

Moreover, mothers felt that parents of typical children could not fully understand what it meant to parent a child diagnosed with autism. As Jacqui and Laura said:

‘How do I feel? Resentful is the wrong word, it is actually much harder for you than for other people’ (2.1-3) ‘What you are going through, you know, other friends, I don’t think they have an idea, they can try be sympathetic but I think that they can’t fully acknowledge or understand’ (2.17-21)

‘They just don’t get it, there is no common ground’ (12.11)

A similar experience was described by Mary who felt that other people could not understand the amount of time and energy she devoted to caring for her child.

‘What you do for your child it’s never...nobody can see it really ummh and sometimes you can’t see it yourself’ (19.17-19) ‘I’ve done the best, I can’t do any more than that but other people can’t see (...)Sometimes very angry, very upset, disappointed (...) people can’t understand and of course this makes me feel down’ (20.7-17)

Adriana, on the other hand, felt that other people could not understand her maternal goals and as a consequence, she felt alone and unsupported in her parenting journey as they could not follow her pace:

‘Oh Gosh, I feel so alone because, you know, either the people who love Dennis, they couldn’t keep up that momentum ummh not my husband, not his godmother, they would say...ummmh yeah I felt so alone ummh (pause) it was Dennis really, it was Dennis that kept me going, the potential that I could see in him, that’s what kept me going, I didn’t get...any...no one could give me that support because (...) they would say give it a rest, you know, let him go away this time (...) people were like don’t push him, and they didn’t understand, they didn’t understand that we have to do this, we have to do this’ (6.16-25)

In many examples the perceived negativity about autism was evident. The mothers were also recipients of this negativity as the lack of understanding about autism undermined the effort they invested in parenting their child. It seems that the lack of understanding and awareness about autism left these mothers feeling isolated and different to the rest of the community, and it was evident by the way they described their experience that this made them feel angry or disappointed.