The autism label – a mother’s perspective

Am I the mother of two children or the mother of two autistic children? Do I label my children autistic or do I not label them at all?  As a non-autistic mother do I even have a right to label my children?

As my children’s parent, of course I have the right to label my children.  My children depend upon me for love, security, education as well as their general well-being. But beyond these general aspects of parenting are the extra responsibilities of bringing up children who are currently unable to understand their difficulties and who need help to regulate their behaviour.

Maybe, one day, this heightened dependency upon me will lessen as they progress into adulthood and develop their ability to manage their own lives. At that point they can, hopefully, decide what aspects of their identity they wish to use and I will respect them for that and follow their lead. At that point I will take a back seat. But until then, my children are dependent upon me to help them cope with the world around them, they are dependent upon me to seek the education and support that they both need.

To get that support has meant that I have had to label my son as having an autistic spectrum disorder and my daughter as aspergers. Labels were forced upon me through need but they helped us to secure the right education for our son and are currently helping us to fight for educational support for our daughter.

But labels also protected us as well.

When my son became unwell and a school refuser, his autistic label protected him from claims that he was a truant and us from claims that we were negligent parents, claims that could have led to court action. His autism helped the authorities to understand that my child required support, not condemnation. It also stopped us being blamed for his behaviour as was the tendency in the years prior to his diagnosis and helped us to look for targeted support for him and us.

As a result we then started to experience a sense of community as we met other parents of autistic children in our town and on online. Labelling made us feel part of a community whereas once we did not belong to any community, ignored as we were because my children do not meet the social norms expected by many in our society.

But for all of the positives, I am also mindful that labels can create wrong assumptions and negative responses.

And autism and aspergers are no exception.  As is often the case, the stereotype of autism created through the epic ‘Rainman’ has contributed to a limited understanding of autism.  Many people fail to see that the autistic spectrum is just that, a spectrum, with autistic people exhibiting varying degrees of difficulties and behaviours (and I hasten to add strengths).  Many people also fail to realise that aspergers is also a form of autism and as for females with aspergers there is even less understanding amongst both professionals and the general public. 

Such ignorance has been made painfully aware to us in the form of rude comments or long stares made by members of the public towards our son and to a lesser extent, our  daughter.  But that is nothing to the harrassment and bullying that has been targeted at my son by local teenagers in recent times.  It seems as though he has become popular for the wrong reasons; easy prey for the teenage predators who get a kick out of humiliating him with verbal insults.

Against this ignorance it may not seem a good thing to embrace the labels of autism and aspergers and expose my children to the risk of bullying, harassment or even disability hatred.  But to withhold from my children the information that can free them from a lifetime of feeling different without knowing why seems equally cruel and denies them the opportunity of support and understanding.  It also potentially exposes them to a lifetime of  low self esteem, a lack of confidence and more serious mental health problems as well as the potential for substance or alcohol addiction.

But for all of this I still have to navigate a society that is anti-autistic.  I have to find a way where my children don’t feel undermined by negative thinking whilst helping them to feel good about themselves.

In this regard, I am select about how I use their autism and aspergers labels.  I only use  their labels to explain their difficulties whenever the need arises; whether it be helping our children understand a particular difficulty they have or  to help others such as teachers and support assistants to understand our children’s needs. 

We have no need to keep on reinforcing their labels to them because in our family our children are loved and respected for who they are - no less, no more than you and I.

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11 Responses to The autism label – a mother’s perspective

  1. megan morrison says:

    What a powerful post! I was so impressed by your vulnerability, your honesty and your willingness to share. Good on you! It is inspiring and refreshing and I am sure that this post has helped so many families feel like they are not alone.

  2. Richard says:

    I fully agree with all that has been said in this post and labelling, used by parents to excuse their child behaviour. It can also have its benefits in more people understanding what autism is. I have a question that I hope I can get feedback about. My daughter and her autistic classmates are a seperate part of a mainstream school. At break times they are fitted with a coloured top and sent out to play with the mainstream kids. I disagree with this form of labelling and would appreciate someone elses point of view, am I being too protective about my daughter, as I thought this could lead to potential bullying or name calling from some mainstream kids.

  3. Aspie in the family says:

    Thanks for your great comments everyone. It is a difficult one, labelling, but overall it has enabled me to understand my children and for my children to access the support they need. I don’t regret the labels though I am cautious about using them. Deb x

  4. Bronwyn says:

    Great post. Autism labels are something that I have thought about alot … and I guess particularly when we first thought about the possibility and just after diagnosis. While my kids are young it is a necessary evil. It helps us get access to services and funding. And it helps explain our home situation as well (with me having to stay at home and focus on managing his therapy). But I know particularly at first I was scared about how once the label was applied how this would impact him in schooling (for his whole schooling career) and how he was addressed. I think that disability … and particularly mental health disabilities are little understood, stereotypes run riot and the general public (including teachers, police and other service providers that don’t specifically work with people with Autism) arent’ really that interested in knowing more.

    One thing with the label I am particular with it is I do prefer to say person with autism as opposed to autistic. As I think the first implies that it is just one of many qualities they have as opposed to being the defining quality about them. But that is just me …

    I am so sorry to hear about your son being bullied. I know this is something that I am concerned about in the future. People on the Spectrum are easy targets for bullies. It just makes me so mad.

    • Beth says:

      labels are a double edged sword aren’t they? Writing as someone whose son has no formal diagnosis, yet most involved believe my son to have Aspergers, I would do anything to have that label right now rather than having to wait over a year for a formal assessment before any label is placed. Like you say it is protective:- school teachers would be more likely to follow through with agreed plans I feel, parents would be less likely to see a naughty, spoiled child ( although they will be told on a need to know basis anyway- let them think what they want in many ways) and supportive- I could access play schemes specially for children on the spectrum which i think my son would enjoy, I could access financial support more easily, respite … etc

      I agree though with the ‘ a child with autism’ and not ‘autistic child’- yes it is semantics but I do think that it makes a huge difference to our own view of our children and to how other’s perceive them too…. I used to lecture on special needs and it was a huge gripe of mine that students never said ‘ autistic child’ or disabled child’ etc…

      So sorry to hear of your son being bullied. The cruelty amongst the human race never ceases to amaze and depress me. Take care. Beth x

  5. Jazzygal says:

    Very well said. I too agonised over the labeling issue in previoius posts of mine but I do believe they are neccessary. Our services are set up in such a way that we MUST have labels inorder to get services. But I also agree with Hammie who put it very well when she said that labels aren’t permanent tattoos. They can be peeled off as they get older;-) Hopefully. Our label is almost peeled off. I am actually hoping that my son starts secondary school with no-one besides teachers unaware of any label.

    xx Jazzy

  6. JuliesMum says:

    Yes, like a card is exactly right – I use ours like a “Get Out of Jail” card when things get tough. My son hates the label so I don’t let him see me using it. But I am ambiguous about the label: it gives you protection from some people, but it marks you out for others. So sorry to hear about those teenage bullies.

  7. Lizbeth says:

    Very well said. I too, select how and when I use the labels for my children. Sometimes labeling them as such works to protect and sometimes to hinder. I guess that is why I’m exceedingly cautious with putting it all out there.

  8. Blue sky says:

    I hate the labels but they are useful especially now that my son is older and his meltdowns can no longer be blamed on childish tantrums :(. But I’m very sorry to hear that your son is being bullied by local teenagers, that really is horrific :(

  9. Amy got her label when she was three and a half and she has been able to use it to the full. I see absolutely nothing wrong with having a label or a disability. I’m disabled as I’m epileptic but I’m also a responsible adult and full time carer to an eleven year old girl with autism. Having that label means we can access the support system and Amy and I can live as full a life as possible.

    CJ xx

  10. What a great post! Well done. I agree, labelling is tough and its a hoop we have to jump through but like you pointed out; labelling can also protect and sort of a card you pull out to get the help/support that is necessary :0)

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