Goldsmiths ASD Diagnosis Project

Longman – you raise an interesting point concerning the sample size and I’d like to clarify this. First, I must note that your figures are slightly exaggerated. You have to remember that even if there are 380,000 adults with ASD in the UK, not all of these would be in a position to be able to complete this survey. For example, they may not have the necessary verbal or cognitive abilities (figures on the NAS website suggest this may apply to an average of 50% of this population, so it cuts your figure in half); participants must also have been able to remember receiving their diagnosis (which would exclude a large proportion of those diagnosed in childhood). But, you are correct in that we have only sampled a fraction of the population and it was a voluntary process (although the criteria for taking part in the study were clearly outlined). Aside from the census, there is no survey that is compulsory; it would be unethical to force people to take part.

These surveys were based on work published in 1997 by Howlin and Moore; a study that sampled almost 1300 parents. We certainly didn’t expect to sample much more than this when planning this research (this was an unusually large sample for autism research). The aim of the research is to determine some of the things that are working well regarding autism diagnosis, and some of the things that aren’t working quite so well. Our sample allows us to meet this aim and more details will be provided about the sample when we publish the results.

Finally, the responses on this thread contain a lot of unfounded assumptions about the research and I would very much like to address these. I want to stress that we have not received any consultancy fees for conducting this research. As noted on our surveys, this research is funded by a Small Grant from the British Academy. This grant covered the cost of conducting the research but the Universities involved and the investigators received no fees. We have no political agenda; this project is not linked to any of the initiatives that you have mentioned. This research stemmed from a perceived need to conduct an up-to-date survey of diagnostic experiences (following on from the last survey by Howlin and Moore, published in 1997) and to extend this to sample the views of adults with ASD and clinicians (two groups that have been overlooked in this regard).

Please also note that we will not have the ‘smallest print mention of the limitations’ – our aim is to make the research findings as clear and honest as possible and to accurately reflect the opinions of the people who generously gave their time to contribute their experiences. We agree that there is ‘too little understanding of the adult predicament’ and hope that this work goes someway to addressing this.

Longman – you raise an interesting point concerning the sample size and I’d like to clarify this. First, I must note that your figures are slightly exaggerated. You have to remember that even if there are 380,000 adults with ASD in the UK, not all of these would be in a position to be able to complete this survey. For example, they may not have the necessary verbal or cognitive abilities (figures on the NAS website suggest this may apply to an average of 50% of this population, so it cuts your figure in half); participants must also have been able to remember receiving their diagnosis (which would exclude a large proportion of those diagnosed in childhood). But, you are correct in that we have only sampled a fraction of the population and it was a voluntary process (although the criteria for taking part in the study were clearly outlined). Aside from the census, there is no survey that is compulsory; it would be unethical to force people to take part.

These surveys were based on work published in 1997 by Howlin and Moore; a study that sampled almost 1300 parents. We certainly didn’t expect to sample much more than this when planning this research (this was an unusually large sample for autism research). The aim of the research is to determine some of the things that are working well regarding autism diagnosis, and some of the things that aren’t working quite so well. Our sample allows us to meet this aim and more details will be provided about the sample when we publish the results.

Finally, the responses on this thread contain a lot of unfounded assumptions about the research and I would very much like to address these. I want to stress that we have not received any consultancy fees for conducting this research. As noted on our surveys, this research is funded by a Small Grant from the British Academy. This grant covered the cost of conducting the research but the Universities involved and the investigators received no fees. We have no political agenda; this project is not linked to any of the initiatives that you have mentioned. This research stemmed from a perceived need to conduct an up-to-date survey of diagnostic experiences (following on from the last survey by Howlin and Moore, published in 1997) and to extend this to sample the views of adults with ASD and clinicians (two groups that have been overlooked in this regard).

Please also note that we will not have the ‘smallest print mention of the limitations’ – our aim is to make the research findings as clear and honest as possible and to accurately reflect the opinions of the people who generously gave their time to contribute their experiences. We agree that there is ‘too little understanding of the adult predicament’ and hope that this work goes someway to addressing this.