Having a child on the autism spectrum can involve a lot of appointments with different health professionals over time. Parents see health professionals during the process of diagnosis, through various therapies their children may need such as speech or occupational therapy and they may also see different professionals to deal with issues like sleeping difficulties or challenging behaviour. Some of the parents we spoke to talked about positive experiences while other parents described less than positive experiences.
Parents who described positive experiences felt that they had a good relationship with the professionals involved with their children’s care and that they could go and see them about problems or difficulties they encountered. As one mother said, “All the professionals we dealt with, I mean particularly those at the assessment centre, were so supportive to us and so fantastic.
We had some fortunate interactions with medical professionals around the time each girl was diagnosed. We were put into contact with a number of sensitive, honest, and very helpful doctors who understood that we wanted an answer and provided it. What I didn’t want at that time, and still don’t want, is somebody telling me what my child’s future is going to be. I will be eternally grateful to one senior, very experienced neurologist, who wrote in his report something to the effect of yes, my child had very severe developmental delays but he couldn’t predict the future; sometimes these children could surprise you. That one small comment made a big difference to me.
Not all of the people we came into contact with were so open minded. We met professionals who wanted to make sure that we “accepted” our child’s disability; for them that seemed to mean accepting their view of our child’s future. That is unnecessary and extremely unhelpful. Nobody can predict a child’s future. Even children with severe autism are educable. As a parent, that’s what you need to concentrate on.
When we were given the diagnosis, it was so important to hear about treatment options. Simply giving a diagnosis is not adequate; we needed to hear “and this is what we are going to do about it”.
Age at interview:
Mary-Anne, a full time carer, lives with her son who is 11 years old. Ethnic background/nationality: White other.
But the doctor who diagnosed him, I think she picked up that I thought with all the right support Arthur would be normal and develop normally and she said to me when, you know, we went back for our final appointment, she said to me, “You know don’t expect it to get better because as they get older the gap kind of widens,” because it is true you know, while they are kind of little and four or five and all kids are kind of chaotic and running about and into this and into that and you know it is not so noticeable but when you have a 10 or 11 year old who is a boy who is kissing everyone and hugging everyone and all those sort of things, you know that is kind of more obvious that they are not neurotypical [laughs].
They are kind of, all the professionals had been very helpful and given me all sorts of tips and that and so you kind of think, that yes okay if I do it all the right way then it is all just going to be fine and it will all just go away, you know and obviously you want to, you want your child to grow up and have a normal life, get a job, get married, and so you do kind of tend to think well it is just the way I am doing things. I know he has got these problems but if I do everything right then it is all going to be fine. Yes, I think that bluntness when I went back and it was like yes, okay, so going to special school is not going to damage his future in any way because it is going to be obvious that he has problems you know, when he is older as well [laughs]. So yes, I think I needed to be told that.
A few parents were pleased that their GPs said that they did not know much about autism. As one mother said, “He did actually say that he doesn’t know anything about autism, so thought well that is a fair comment. I would rather know that than him try and bluff his way through and then give me information that is possibly not right”.
Rachel, a former social worker, is now a full time carer and lives with her husband and two sons aged 9 and 6.
How would you describe your dealings with professionals over the years?
I’d say the ones that knew about Asperger's have been brilliant, I would. I think as soon as I got a diagnosis for my boys, dealing with everybody is ten times easier. When it is the dentist or the hairdresser or wherever you go, or when it is talking to paediatricians or anyone else, they have all been really good. All of them have been excellent. If you go into see a GP and you say, “He won’t want you to put that stethoscope near him straight away, he has got Asperger's.” They will immediately stop what they are doing and they will take the guidance from me or in some cases obviously they just know how to handle it. So I think since the diagnosis they have been really good. Since we have had the diagnosis and knowing they are autistic they know how to deal with them and then if somebody understands that then life gets easier. Occupational therapists have been great. Paediatricians have been great and my GP has been great as well. So, yes, very good.
For some parents, the best approach for the GP was to listen and refer them to whom they want to be referred. One parent described how “My GP was fantastic. I can’t praise him enough; he pointed me in so many directions.” Another mother described her approach as; “I have gone in there thinking, you know, I want what is best for my child and you are going to give it to me.”
Some health professionals were particularly supportive and attended school meetings or visited the family at home to see how the children were in their home environment. This outreach support was popular because it incorporated siblings and other family members and “helped smooth over misunderstandings and frictions between parents and school”. A few parents managed to organise a meeting between the different professionals involved in their children’s care and this was a successful way of developing understanding of the child between the various people (see ‘Factors that have helped’).
Nuala, a software engineer, and her husband have a daughter aged 11 and a son aged 9. Ethnic background/nationality: White British
We did have a round table discussion that I proposed and I got the school and some of their support networks, there is a specialist teaching support wing in the County Council. We got our paediatrician and myself and my husband all together in the one room in school and we talked about him for an hour from all the different perspectives. And I thought that was really helpful. Everybody was very pleased. They said they had never seen anything like it. They had never spoken to each other before [laughs]. It was quite remarkable. And I felt that was really useful, because before that we didn’t have any other way of transferring medical information except by us taking, going to the paediatrician and talking to her and getting information and then taking it to the school ourselves and occasionally we would get her to write a letter if there was something specific. And ditto there was no practical way of connecting educational information and feeding back.
There were various examples of negative dealings with health professionals. One parent described having a good paediatrician was “pot luck” while another said that “professionals are a mixed bunch”. Several parents talked about the heavy workload key health professionals had and the lack of contact their children had with them. Another mother thought that professionals needed to “catch up a lot; a lot of professionals are years behind”.
Mike, an insurance broker, and his wife have four children aged 28, 27, 18 and 14. Ethnic background/nationality: White British
So when I first went in you could be intimidated and a lot of parents are intimidated because the professionals talk in professional language, lots of acronyms. I always stop people. I mean we have got an acronym for our Autistic Support group which is nice HAFS, HAFS rolls off the tongue, but that doesn’t mean nothing to anybody else who doesn’t know us. So I always stop people. I have learned that. If anybody uses an acronym I say, “What does that mean?” Because I understand it is to speed up the conversation, you can talk in acronyms if you are all professional. But if there is a parent there who doesn’t understand and is not used to all that kind of language, I say, “Can you speak in simple English, words of one or two syllables?” Because you have got to because I think they try, I think at first some of them do try and they do overawe you, over power you with all this language and so you end up going in. They talk about your son or daughter and you come out and you are just absolutely bemused. You don’t know what has gone on, you know.
That doesn’t ever happen to me now. It never happens I make sure. Both of us here, probably me and him, but they know not to try and kid us basically you know. We want the thing in simple.
So my dealings with professionals, at first I found that they did sort of talk down to me a bit you know, we are the professionals. I always open my conversation with people like yourself who have letters after their name, you know, you know, I have got them, but it doesn’t make any … I always walk in and say, “We are in this meeting now. We are talking about my son who is autistic and I am the professional in this room, not you. I am the professional regarding my son.” And that usually takes the wind out of their sails, which I think … But not everyone is like me. No some people are quite shy and reticent and wouldn’t feel comfortable to be able to stand up for themselves.
So that is why they have advocates so … me and him are the advocates for all our parents. We always go to every meeting with every professional body, with their permission so that they don’t get blinded by science. They always sort of seem to, once either of us walk into the room the professionals have to take on a different approach. We know they do, because we know how they talk to them when we are not there, when we have not been there and how they talk when we are there; completely different approach. So for professionals and I think if this is going out to professionals please talk to parents in simple English. Try and explain to them simply what the problem is and what you want to try and do to resolve it and try and not use big language because they don’t understand it. You know they are professionals like you. It is not their forte you know. So that is my plea to professionals.
Age at interview:
Tony, a market manager, and Alison, a dinner lady, have two children; Fiona aged 13 and Nathan aged 10.
Tony' Yes, we had to go back and see the consultant there. Her gaffer she wanted us to see the consultant there and then the consultant referred us to their psychologist. Child psychologist, and then she just give us some tips and …
Alison' We used to go and see her a bit really …
Tony' But the basic truth was that yes he is autistic and you have just got to get on with your life as best you can really, if you know…
Alison' I think we kind of got the wrong end of end of the stick about that. I am not really sure, because when we first started to go and see the psychologist, we took Nathan with us. We took him out of school and took him with us. But every time we went they kind of let him go off somewhere else and play with somebody and it was just me and Tony in there and then eventually after we went she said, “You don’t have to bring him with you, you know.” And I thought well, surely it is about him, it is not just about us, it is about. I mean and she used to sit there and have good chat with us didn’t she, you know, and I don’t know about you. I mean well we said didn’t we when we got back, what did you get out of that? And you sort of said, “Well not a lot really.” And I am like, well no, I didn’t get a lot out of it either. I mean she wasn’t really telling us an awful lot that we didn’t already know.
Jacqui, a full time carer, lives with her seven children aged between 23 and 10. Ethnic background/nationality: White British.
But in general a lot of the time I find that professionals don’t want parents to tell them things. You have to feed their egos and there has got to be a particular way that you can feed things into conversations so that they think they have come up with the answers. A bit like dealing with men really [laughs]. And if you have done that then sometimes it is easier, but really you should be able to speak straight because these are important issues. You can’t afford to wait to six months if your child is being bullied and if you get one appointment every six months or you are waiting here… I have just got an appointment fairly recently, for Matthew to go for occupational therapy to have treatment kind of thing for occupational therapy, although he is 23 and he has just got engaged.
And you know he has been out of the school system for goodness knows how long and his referral was when he was 14. So … and it is just fairly recent. Sometimes things just go on and are such a long time because it is lack of resources all the way along in every way shape or form. And that is why I suppose that it would be nice if professionals would listen a bit more because if they are so short, short staffed and short of resources, and short of time then the very least they can do is actually take real notice of the people they are working with and if a parent says I think this is a problem to really listen to it and make sure that they get them within the appropriate channels. But here in Blackpool we have very little. We really do. It is a case of going it alone really to a certain extent.
One problem for some parents was the lack of joined up services which resulted in a lack of appropriate support. In addition to this was the lack of knowledge about autism among some professionals. This was combined with some parents’ criticism that they were not listened to or taken seriously (see ‘Effect on parents’).
Caron, a full time carer, and her husband have two sons; Leo aged five and Peter aged 2. Ethnic background/nationality: Mixed race.
Generally how would you describe your dealings with professionals?
I think that if I was more like other business women, a sort of woman, instead of a stay at home mum I would have been dealt with a lot better. I do believe. I think if they knew what I was talking about and I went in there and I was right ‘blah blah blah’, they would be treating me a lot me a lot better then me going well I think there is something wrong with him ‘blah blah blah’. Do you know what I mean? I think they do stereotype, yes, that is what I think.
So you are saying not too satisfactory then?
No. No. Not when I was trying to get help for him and even now, you know, if I ever try and ring his paediatrician, well I have tried to three times in the last month and I haven’t got a single reply, I can never speak to her and she will never ring back. So it is still not very good no.
One mother described how one doctor asked her daughter, “How long have you had this condition for?” Another parent felt frustrated that “someone who was heavily qualified couldn’t pick up the fact that if he had been referred to a GP three years earlier, it would have made our lives considerably easier.”
Daryll, a special needs teacher, is divorced with a son aged 22 and daughter aged 19. Ethnic background/nationality: White British
We heard from every team in you can think of from Social Services. And they all came.. they said, “Yes. All right, she has got this condition, she needs this help. But it is nothing to do with us. It has got to go to somebody else” and the Mental Health Trust which has only really used to dealing with schizophrenia, bipolar and severe things, they have had no experience of it. And I even rang the Connexions service. Is this national I don’t know? I think it is. And they said, “Well we have never come across this problem before. We don’t know where to send you”. So I said, “Well if you resolve it, could you please come back”.
Age at interview:
Christine, a full time carer, lives with her partner and her son aged 27 and daughter aged 12. Ethnic background/nationality: White British.
It shouldn’t be… and then I find through my experiences that your supposed to sort of go by their example, because you think they know better than you and a lot of the time they don’t know anything, because if they did they wouldn’t come out with the things that they did. So maybe they are just sitting every day when they are at university and are studying and they are reading people’s works and they are reading people’s series and stuff and all right I mean it does help them to get where they are, and a degree in whatever they are studying but if you have not got an open mind or you don’t listen to people, or maybe sometimes you might be wrong even if you are a professional. I can’t see the point in them dealing with children because to me when they did them things to us and they even tried to say that they were going to take her into care and I couldn’t believe that because we hadn’t done anything wrong, and she hadn’t.
Carolann, a teacher, lives with her husband and daughter, Nita, who is 19 years old. Ethnic background/nationality: White British.
How have your interactions with health professionals been, how have they been since that period?
What interactions with health professionals? They don’t exist. There aren’t any. Who do I go to? Who knows about Asperger's in this county? Nobody. I go to me, because I know far more then any expert in this county. I have read. I have researched. I am extremely knowledgeable and if someone wants the answer people come to me. In fact it is ironic, there is a psychiatric unit here called [name], where they put a lot of Asperger's people unfortunately end up in there, or suspected Asperger's people. The consultant psychiatrist phoned me a few weeks ago to ask if I could recommend any form of treatment or anywhere I could send this person for diagnosis. I get mental health people phoning me up all the time. Social workers, teachers... I am an unpaid mum volunteer and they come to me! I actually go out and do talks to mental health teams about Asperger's syndrome because they really don’t understand what they are dealing with. So in terms of your original question health involvement, there is no involvement. There is nothing out there for Asperger's people at all. Plus she wouldn’t fit.
Again we come to this awful, you know thing, she is not learning disabled. She is not mentally ill. She is not physically disabled. She is autistic and there is no recognition of her form of autism in this county. So who would I go to? If she had broken her leg and had autism they would treat the leg, but not the autism. If she had bipolar disorder she might be lucky enough ha ha to get onto a mental health team but they would look at the bipolar disorder and not the autism. They can only deal with what they are presented with and autism is still such an unknown quantity, untrained people dealing with it. I mean I am sorry for them. I am not having a go at them, because they have not been given access to proper training, but the fact remains that there are no trained professionals. Therefore I have no involvment with the health service at all.
Several parents found the amount of bureaucracy and form filling they had to do repetitive, stressful and frustrating. One parent who was asked to answer the same questions when trying to organise support for her daughter at university reported saying “For crying out loud. No. Not again. I mean I know they have got these check boxes to tick and I have done it over and over again.”
Several parents also talked about how much they disliked services being budget driven and how their children were treated as a “drain on resources”.
Ciaran, a development manager, and his wife have a son aged 21 and daughter aged 18. Ethnic background/nationality: White Irish.
And that is the biggest problem we struggle with as trying to persuade professionals who hold the purse strings what the real problems actually are and particularly when you are arguing over school placements, trying to get your child into an autistic specific education environment. These people who actually make the decisions don’t really understand the need for it, therefore, you know, will quite often just say no because it costs too much, and the fact is the earlier you put expert input into these children, the further you can pull them away from their autism, the more they will reach their full potential. They will be always be autistic but there is no reason why they should live in isolation without being stretched to their full potential and to me it is a human right to be able to do that. It is abuse of human rights not to deliver those kind of services, particularly when it is just based on budget restriction.
Why do you think there is such a lack of general awareness. Even amongst health professionals also the general public about autism?
Well when you think about it is only in recent times that it has actually been diagnosable and it is only really the last twenty years. I mean Asperger's syndrome was only really identified in the nineties, early nineties. Autism generally was just classed as a mental health problem or a learning disabilities problem and we still seem to have not got any further. On that issue, in terms of if you look at your local authorities the team that are responsible for those bodies are the learning disability team or the mental health team. There are no autism teams. That is the first thing we need to get round to. Build up our level of expertise within the professional bodies by seeing it classified as standard lone condition.
You know, I will give an analogy, when you present yourself at A & E at hospital with say a cardiac problem you don’t expect to be seen by the ears, nose and throat specialist just because he happens to be on duty. Well that is what is happening now. We are having generalists providing services who are not experts in the field. So that is what we need to do. If there is a shortage of plumbers we try and develop more plumbing skills through the education system and NVQ system, don’t we? If there is a shortage of electricians we do the same there. But we know there is a shortage of autism specialisation but we don’t seem to be doing anything about it.
Age at interview:
Jeanine, a local authority employee, lives with her daughter aged 11 and son aged 8. Ethnic background/nationality: White British.
After a two year wait from the Health Authority he finally got to see an Occupational Therapist and had about six to eight sessions which were really useful and which he quite enjoyed but then they stopped because that was the end of the resource allocation.
Now I don’t understand this but you hear a lot about integrated children’s services. We hear a lot about the ways in which health and education should be working together but it just really isn’t happening and I can’t understand why the investment isn’t put into my child at this early stage to help him to write, which will him help him access more of the curriculum and help him to be more independent at school. And really help him with his ability to move on with his education.
It is clear that parents had mixed experiences of dealing with health professionals and these are discussed further in ‘Getting a diagnosis’.