Parents of children on the Autism Spectrum

Dealing with professionals

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.

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.

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”.

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’).

Negative experiences
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”.

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’).

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.”

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”.

It is clear that parents had mixed experiences of dealing with health professionals and these are discussed further in ‘Getting a diagnosis.

Last reviewed January 2015.

Last updated November 2012.

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