Poor and not fit for purpose.
The arrangements are inadequate and leave individuals on the autistic spectrum without the needed support. I am blessed to be a mother to two adults on the autistic spectrum. Both have been denied any support and my son has been refused twice based on his IQ being over 70. Recently he was referred by the GP, his ticks and movements have increased and he has had additional diagnosis of ADHD, Dyspraxia and possible Tourettes. He recently received a letter from SS saying he does qualify for the LD team, with a suggestion he gets in touch with some charities. No new diagnosis, just dismissed based on an IQ assessment for over 4 years ago. If I died he would not be able to manage his money, or life but it seems that in Wales there is no support for people like my son. I have personally met many autistic adults in England whose IQ is over 70, they receive support. I believe this is due to the autism act in England. My son and daughter both have mental health issues in addition to their autism, but the criteria for mental health support seems to be you have to have been under secondary care. This leaves them without support.
Yes. I am concerned that guidance wouldn’t be strong enough, I would like to see laws that enforce the strategy.
I think it should have a strong emphasis on being supported by the law, guidance and advice is easy to ignore.
Can’t refuse services based in IQ alone, need to really look at functioning. There is a tendency to only look at one aspect, eg LD rather than how the all different factors affect an individual. I would like to see autism teams set up across Wales. I also would like to see the teams working together, my daughter has a physical disability as well as autism and mental health problems. I also believe the impact of caring for more than one person should be looked at. Autism seems to occur in families, yet any assessment looks at the individual in isolation.
The Welsh Government should consult widely and really listen to families and autistic individuals.
The use of qualitative and quantitative consultation. The personal stories need to be heard. The use of open questions that allow for a wide variety of responses rather than closed questions that can produce a specific response.
Yes. The strategy could be reviewed every 5 years. Too often uses money that could be used providing support for individuals.
I think the Welsh Government should provide a tribunal for families and individuals on the spectrum. With fines for public services who don’t comply. In terms of diagnosis the professional should be up to date with current diagnosis. This means professionals demonstrating their competency.
The service user and those on the spectrum should be consulted. I local autism group run by the LA is too open to being controlled.
I find it disturbing that where I live is very poorly served. I have been told that it’s a two year wait for an adult to see a Psychiatrist. I also believe that the NHS and schools should have to accept a diagnosis that has been provided privately by a credible clinician. In my area the NHS refuses to accept a diagnosis from an Educational Psychologist that they pay to do some of their NHS diagnosis. This is just playing games, particularly when people go privately because of the long wait on the NHS.
It is very difficult and often GP’s don’t really know who to refer to.
I would like to see a clear pathway with laid out time frames and more clinical staff employed.
A clear laid out pathway, self referral is possible, access to experts in autism. Often the mental health teams who are a gateway to a diagnostic referral are generalists. This means that women and those with ‘less obvious’ autism are denied a diagnosis.
Yes, posters in GP practices and hospitals. Yes because this holds them accountable.
Not sufficient, there are not enough clinicians.
Very poor and inadequate. There is a big push to use the voluntary sector, however this ignores the fact that often those most in need can’t access this. I have observed that the same few people access a lot of different services, this enables the charity to claim success, but the people who are really on need are at home, unable to leave the house without support. They are denied this support because they have too high an IQ.
Yes at the moment children who move into adulthood fall off a cliff and are lost to local authority knowledge. Children who had a statement and attended a special school are deemed to need no support as an adult. You don’t grow out of autism, how can this be justified?
Yes I agree, I also feel that the hospital traffic light scheme should be extended to all those on the autistic spectrum. My daughter has a high IQ and has a lot of medical difficulties due to EDS and Pots. She becomes very anxious in hospital and Dr appointments. I feel that it would be helpful to have her difficulties written on the system.
A local authority database that is joined with the NHS, every person who is diagnosed is placed on the list. GP’s should also keep a database and have health checks to see how the person is getting on. This happens with Learning Disabilities.
I think it should be provided by autistic adults.
There is a need for all staff to receive training and it should be part of their CPD.
I feel that the support for employment throughout Wales has been limited to certain areas. In North Wales there is a lack of support into employment. Transport training is also an issue.
I feel that the definition of autism should not be attempted in the legislation, I would prefer to see wording around a diagnosis of autism that is provided by qualified professionals and is keeping to the diagnostic criteria as set on in the DSM V or ICD10.
The financial costs of leaving an individual to reach crisis point before providing low level support. My brother took his own life last year, he had sought help on many occasions, but the support wasn’t there. He spent 6 weeks in intensive care suffering with a hypoxic brain injury. The financial costs could have been avoided had he been given the right support. That is not even mentioning the cost of a lost life that is not measurable.
The cost of some support can lead to a person gaining and keeping employment. There is also the issue of including everyone in society and making them feel useful. This reduces stress on the NHS and the person can move to pay taxes.