There seems to be some sort of idea that once children become a certain age they no longer require any help from their parent carers in regards their disability. This is why I feel that it has been difficult to support our son at University in regards his Asperger’s Syndrome.
Growing up and Growing out of Disabilities
I think that some people believe that they somehow out-grow Asperger’s Syndrome. This appears to be the view of the Department of Work and Pensions as many, many children lose their Disability Living Allowance and are not awarded a single point for Personal Independence Payments. At a time when these young people need more support than ever it just seems to be taken away.
About Asperger’s Syndrome
Well what is Asperger’s Syndrome? It is no longer diagnosed as such in the UK, I believe, but instead comes under the umbrella term of Autism. It is not helpful to determine “levels” because all that really means is how visible or obvious that may be. Things that people normally take for granted or are physical in appearance. I believe this is where the problems began.
But I digress, Asperger’s Syndrome is a variation in the human brain commonly referred to as neurodiversity. It is characterised by difficulties in sociability, communication and restricted and repetitive patterns of behaviour and interests.
Many people prefer to say that they are Autistic, that they do not have Autism – it isn’t an accessory. It is always best to ask those affected which they prefer. In this instance I am writing about my own son and he feels that people use the term Autistic like it is an insult so prefers not to use it. Also there are bad things associated with Hans Asperger, who the term Asperger’s Syndrome is from. This is what our son was diagnosed with and again prefers to use and therefore this is why I will continue to use this phrase.
Losing the Right to Help them with their Voice
As I said above one of areas of difficulty associated with Autism is with communication. That is verbal and non-verbal. At 16 I was assessed and asked whether I wanted to become his advocate – with his permission. Not everyone is able to give this, and that is even more of a battle.
A voice is needed because sometimes they do not understand what is going on, or how to say something – other times it is just too much for them to deal with, in order to meet their needs.
I have always struggled to advocate for our oldest’s needs. Even at school they accused him of just being lazy, like I was letting him have the “excuse” of his diagnosis. When he got older it just became worse. I just kept being made to feel like I was wrapping him in cotton wool. That I could not let go of the apron strings as it were. I am ashamed to say that I did not fight this more. This meant that he went to university without the right support in place.
Going to University with Asperger’s Syndrome
Going to university is a huge achievement, but even more so when you have a disability. There is some help and support out there, however, our son went off to University wanting to be independent. Although he was diagnosed with Asperger’s Syndrome when he was 10 years old he did not want this to be a big thing. We had supported him to the point where he did not believe that he needed any help.
Trouble at University with Asperger’s Syndrome
Firstly I would like to say how immensely proud I am of him for going to University. He has done really well given the circumstances. I am, however, disappointed at what appears to be the lack of support given at University.
What he has had difficulties with I do not feel are my place to share. However, after spending four years away from home he came back, having completed two years of his degree. He could have left with a diploma but it was sorted that he could continue at the local university – as long as he repeated the second year again!
The old university he had support who would communicate with me. Apparently this university said that they wouldn’t.
The Final Year of University
I am sure the last couple of years have been tough for anyone with the pandemic, but this has been especially hard on our son due to his difficulties with Asperger’s syndrome. In fact since he has been at university he has been diagnosed with anxiety and depression too.
Not only has the student debt mounted up but they have now decided that he wasn’t entitled to this year’s grant and want the money back now! They now are unwilling to let me deal with it either. All that seems possible is a phone line to pay the money back. There seems to be no way to find out the why they have done this. You can’t do it on the phone as they say their lines are too busy. I tweeted them but they say they need him to contact them. Citing GDPR restrictions – even though I am down on the account as being authorised to discuss things!
End of the Road
The University have not helped address the difficulties and the only options he has are to repeat again (don’t forget tuition fees alone are £9,000 a year!) or to accept a degree without honours. He is done. He just cannot take any more.
To me he seems broken. He cannot do simple things. Really struggling. But there does not really seem to be much help out there. We do not know what happens next. I have been given some information of places where they might help but I just don’t know where to start. A lot of help seems to be for 16-25 year olds. He is 25 in 6 months.
Anyway I just wanted to get this all off my chest. I am sure in a few years we will look back on it and see just how far he has come.