Cann anyone let me have their experiences of getting social care support for their Aspie at university? My daughter has already had to defer her place once, and I still cannot get any firm answer from the Mental Health Trust. I am informed at present that Essex Social Services have more demands on their resources than they have money for. My answer is that This is no my problem. If they cannot budget then it is up to them. If she cannot go to uni then she will be forever dependent on me. I will take this to the European Court if necessary, so any advice on that would be much appreciated.
Cheers to all you who struggle with AS out there,
Daryll Golding (Mrs, amazingly, not Mr!)
Aspies in HE? Not everyone knows all those abbreviations.
I am guessing HE = higher education.
Aspies in HE? Not everyone knows all those abbreviations.
Aspies is the more user friendly name for sufferers of Asperger's syndrome used in our area. It is also shorter to write! HE is Higher Education. By definition of AS, all sufferers are of average or above average intelligence, so they should have access to university. My own experiences with my daughter and others who have approached me, demonstrate that this is not the case, as most Social Services are unable/unwilling to provide the social care support that AS students need when they leave home for university.
I am now doing consultancy work in this area, under the umbrella of SAFE (supporting Asperger's Families in Essex) to try and get more HE opportunities for AS sufferers.
Daryll Golding BA, Cert. Ed., Adv. Dip. Ed. (Special Needs)
Yes we all understand the aspie part of the sentence, but when you now say "sufferers"...
... you aggro a whole lot of neurodiversity supporters here.
"The prison of autism" is just as provoking.
If I understand correctly, access to education is not really the problem (you say your daughter has had to defer her place once already, so she does have a place), but access to social services. What kind of services does she need that could not be provided on a university campus now? (I am assuming that universities in the UK do in fact have counseling and health services for all students, but I am in the US and have been out of school for many years myself, so admittedly I don't know what is available to your daughter.)
It seems to me we have more than one issue here. Getting support services at the uni shouldn't be so hard so it looks as if there is a good case for lobbying the government to provide better services. I wonder if it were possible to get in contact with other parents who have children who also need support in their studies.
There's also the issue of what happens if that support can be obtained but there are no suitable jobs available afterwards. Getting a degree is not always the best way to guarantee work - sometimes a practical course is better. There is such a shortage of positions where employers are willing to make a few little concessions for people like us. The public service used to be good but now it's a lot harder to get in.
Hopefully, somebody in the UK can help better than me because I'm talking more about the situation in Australia.
If I understand correctly, access to education is not really the problem (you say your daughter has had to defer her place once already, so she does have a place), but access to social services. What kind of services does she need that could not be provided on a university campus now? (I am assuming that universities in the UK do in fact have counseling and health services for all students, but I am in the US and have been out of school for many years myself, so admittedly I don't know what is available to your daughter.)
The provision for my daughter for her social care, i.e. shopping, cooking, personal hygiene, organisation is not available via her DSA (Disabled Students Allowance) that is given to all students with a diability. My daughter needs extra help with her daily living, help that I have provided so far. She is deemed a 'vulnerable adult' under the Disability Discrimination Act, so has to live with a carer of some sort.
Most universities in the UK will offer the place, but the social services have to pay for extra support to deal with emotional and practical needs. This most social services are reluctant to do as it is expensive. The difficulty is that Aspies do not 'fit' into any of their definitions. If she were blind or in a wheelchair, then the help would automatically be there, but she 'appears normal', whatever normal might be, but she is not. She does need support on a daily basis, but when and where will not be known until she gets to uni.
After 2 years of fighting, and a threat to take the case to the European Court of Human Rights, my local social services have now agreed that they will pay for her, so she will go up in September. Her university, where she will study Egyptian Archaeology is in Swansea, and we live in NE Essex, so it is a very big separation for us, but it is the only way that she will become independent.
My big worry is that most universities will offer places, but not insist on a support package. This inevitably leads to the student being unable to survive the uni world and leaving, which means there is nowhere for them to go forward.
I am now working as an advocate to help parents through the very sticky path, and every council acts in a different way, but as more and more youngsters are getting assessments for AS then this is a volcano about to erupt!
We have been lobbying the government for a long time, but we are not getting very far. They deem it a minor issue affecting a small minority; they have no idea just how big that minority is! I am trying to get in touch with other parents, as most do not have the time to sort it. I have spent about 1500 hours dealing with this, but I am a single parent as well as a qualified special needs teacher, and I am very determined. I already have a 22 year old son in uni with severe dyslexia, and it took me years to get him the help he needs. I have been fighting for one or other of my children since my son was 5, so I am an old hand at it now!