The disability label

Is my son disabled or not has been one of the biggest questions that I’ve had to tackle over the last few years.  It all started at the time my son developed mental health difficulties shortly after his diagnosis of an autistic spectrum disorder in 2008.  Encouraged by our consultant to apply for disability living allowance (DLA) for our son, I was suddenly faced with the issue as to whether my autistic son was also disabled.  Having grown up with the idea that disability was a physical impairment, and having grown up not knowing anything about autism, I now had to rethink my understanding of disability. 

My dilemma was not helped by the application forms for DLA whose questions were biased towards obtaining information about the needs of someone with a physical impairment.  Questions that asked for a specific number of hours that my son required assistance were difficult to complete due to the unpredictable nature of my son’s condition. 

However, not one to give up and encouraged by our consultant, I submitted additional notes describing my son’s difficulties and the support he required.   However, the process of applying for DLA was depressing and draining.  Not only was I confronting the reality of my son’s impairments but it also confirmed to me that I had to label my son as disabled in order to get him the support he needed. 

Still, there were times when I felt a fraud going through this process.  The fact that the DLA forms were aimed at physical impairments made me feel as though my son’s autism and mental health difficulties were not a disability.  I started to think that the state did not see those with hidden disabilities as disabled.

But this is the general attitude in our country.  People don’t see autism or mental health issues as disabling.  With nothing tangible to look at, many people assume that a bit of social anxiety or depression is not a disability but rather something of their own making which can easily be put right through self determination or medication. 

They fail to understand that autism and aspergers are life-long conditions that are not remedied by any of these things.

With my son, many people do not see the boy who can’t leave the house, who looses the ability to communicate and reason, who fatigues easily, who becomes easily distressed by change and who covers his ears because of sensory pain.    They rarely witness the full extent of my son’s difficulties because he is often unable to leave the home when he is having a bad day.  Instead when they do see him, they see a boy who talks animatedly about lego or x-box games which to them is sufficient  to deduce that there is nothing wrong with him.

But on the occasions that they do witness his autistic behaviours their ignorance is apparent in the crass comments that suggest that my son is a social deviant or the product of poor parenting.  Such hurtful comments only goes to undermine me and my family and deprives my son of the support and understanding he needs

In a way though my son is not disabled.  Yes, he is autistic and he is unique and different and has many challenges but he is not necessarily disabled.  In our home and within our family we have adjusted and adapted our lives to include our son who in many ways is just an ordinary boy and teenager.  We don’t see him as a disabled person.

It is society that has made my son disabled. 

Poor education has exposed him to mental health problems and the risk of unemployment and poverty in future life, ignorance has led to bullying and social exclusion, the physical environments of buildings makes it difficult for him to enter shops, restaurants and cinemas due to the noise or lighting or the layout of the place.  I could go on but the point is that ignorance about the autism spectrum have acted  as barriers to my son and made it difficult for him to access the things that many of his peers take for granted. 

His chance to become the best he can be and to play a full part in British society has been compromised and from this perspective I can see that he is disabled. 

However, within our family, our son will always be our beloved son and brother not someone who is defined by their disability.

This post is day 4 of the nablopomo challenge.

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17 Responses to The disability label

  1. Great article. I know exactly what you mean. My son was diagnosed with Autism and Developmental Delay in 2010 and it was only subsequent to this that I realized that I myself have Aspergers Syndrome. When I was trying to get my diagnosed I was told did I really want to label him? To me a label is just a way to get help for him and personally I never had a label growing but I always felt as different as if I had one stamped clearly on my forehead. I often wonder if I would have had all the problems that I have had in life if only a label could have been given to me when I was young. Now I feel I would have welcomed it because it would have meant I could have been myself years ago. You’ve done the right thing for your son and hopefully I have too for mine. I write about AS/Auitsm too on my facebook. Take Care.

  2. Pingback: The disability label | Aspie in the family « Better Disability

  3. Julie says:

    Deb
    What a great post. My son gets the highest rate of personal care and the lowest of mobility care. I feel wiped out after form filling, or just a doctors visit or a school review, as always over the years. People don’t understand it us that manages it all, and fight all the way with this hill we keep climbing for our children with needs.

    Keep climbing, x

  4. Galina V says:

    Bravo! What a thoughtful well written post! I remember those DLA forms, felt exactly like you said, a bit of a fraud and extremely depressed. It felt like I had to malign my son instead of writing positive things about him. It was a very negative experience, but the teacher counsellor who helped me with the forms insisted that I write only negative and difficult things. In the end I decided to add a big piece on how we love our son and that he is a beautiful loving child, I just had to do it, doubt anyone read my essay on maternal love, lol.
    It was like betraying my son to the social services or whatever. Of course, it was not, and with one income we needed that little extra to spend more on our son’s specific needs. All this money is spent entirely on his riding classes etc
    But I also see the point that our disability is not recognised as a disanility for example to have a reduction of the bloody council tax, which is excessive, just because he is not a wheelchair user. The expense of changing a shower room into the bathroom, because our son categorically refused to be washed in the shower, does not count. They give with one hand, and then take with the other. The money I receive as a carer, hardly covers the council tax in our case.

    • Aspie in the family says:

      I know what you mean. My son doesn’t have mobility problems and doesn’t need a wheelchair and things like that but he does require other type of support and adaptations to make his life more comfortable. Lots of people don’t realise this side of things. Deb x

  5. Blue sky says:

    I’ve seen this from both sides. I’m sure I must have filled in some forms for my dd with cerebral palsy but it was an easy process to get the various allowances, a long term illness card and the equipment that is needed for her. Not so for aspie boy. To get anything for him you have to describe his issues and behavioural problems in lurid detail when you’d probably rather not think about them, and still haven’t managed to get the Irish equivalent of the DLA.

    On society making people disabled, I would argue that in a sense that goes for everyone. If all pavements we’re dished, all swimming pools had hoists, all shop aisles were wide, if time had been been taken to really help my dd learn properly to communicate, then her disability would be a lot less noticeable xx

    • Aspie in the family says:

      I agree; that society can make anyone disabled. I often think that I’ve become temporarily disabled in a way because of caring for my son. My ability to access life outside the home has shrunk due to caring for my son 24/7 due to his mental health problems and inability to attend school. Saying that though, my situation is a temporary thing (I hope) but my son’s condition is lifelong. x

  6. Bronwyn says:

    Such a beautiful post. While I don’t know that specific form … I have seen many like it. In order to get the support you need .. you have to jump through so many hoops … and most of them appear to only pay at best lip service to people with conditions like autism. Mental Health is both little understood and … what appears to be little desire to be understood.
    Thanks for sharing!

    • Aspie in the family says:

      Thankyou Bronwyn. You’re right; we have to jump through many hoops to get the support our children need. Its tough, considering all what we have to do on a daily basis.

  7. @tru says:

    My Aspie son is 22 now & has managed voluntary work plus a full-time apprenticeship for a year. Our dilemma was mentioning his autism on application forms for work. I left him to make the decision & he DOES put it in the ‘do you have a disability’ section on forms. He also states the he needs no accommodating as a result of it too. He’s aware that some employers may not want to give him a job because of his Asperger’s, but he’s also savvy enough to know that a disability ticks the ‘diversity’ box! Those who choose not to consider him are the ones who are missing out on a hardworking, loyal & enthusiastic worker.

    • Aspie in the family says:

      We’re not at that point yet but I have wondered what people do with mentioning their disabilities on application forms etc. Thankyou for sharing your experiences. I hope your son continues to do well with his voluntary work and apprenticeship.

  8. jontybabe says:

    Oh those bloody DLA forms. I also felt like a fraud filling them out because I was just a mummy and not a carer. Surely all I was doing was looking after my little girl. However, I soon realised that I was both. We have just recently pushed for high rate mobility to qualify for a more suitable car as my daughters physical needs are getting quite demanding as well as her behavioural and care needs. I feel horrible about it all! When I read through some of the supporting letters etc that we submitted with our application and appeal I wanted to vomit. I couldn’t believe that all those things that were written were about my child! It really hit home with me the extent of her difficulties that we were ‘managing’. Its not easy hun. Great post! x

    • Aspie in the family says:

      Its a horrible process isn’t it? Sorry to hear you’re going through this all again and I hope you do get the higher rate so that you can get the things to support your daughter.

  9. Lizbeth says:

    Sigh. I am right there with you. I had a hard time with the word disabled and prefer to use the word different but different does not convey the need or necessity for support. I so wish some of these people at the other end of the paperwork could live a week with us and see the true extent of being different. Maybe that would make it a little easier to receive funding.

    • Aspie in the family says:

      Yep, I wish the people behind the paperwork had some empathy into our situations as well. A bit of compassion would make our lives a lot easier, I think.

  10. Naomi says:

    You’re so right about filling DLA forms in…I was really low for about 2 weeks after the last lot. The differences that our boys have can so easily be managed, with very minor changes to the school environment, BUT…it seems there are many schools unwilling to put in a little effort for what would be a great return. Another great post…look forward to tomorrow’s. x

    • Aspie in the family says:

      Hi Naomi. I totally agree with you. It makes me sad and angry that many schools don’t have sufficient understanding of the autism spectrum and do little to accommodate our children. Its very poor considering the amount of research and knowledge about autism. Deb x

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