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Kids with AS

Parents with AS

Kids with AS

Having a child with Asperger's syndrome is not the end of the world. No matter how bad you think Asperger's is, it could have been a lot worse.

The cuckoo is known for laying it's eggs in the nests of other bird species. They are able to change the colour of their eggs to match that of the bird whose nest they are using. After hatching, the nesting mother bird, deceived, feeds the cuckoo as if it were her own, often long after it has grown much bigger than her and at the expense of caring for her own less demanding chicks.

When a child is diagnosed with Asperger's, some, but by no means all, parents react as if they just found out they got a cuckoo... a child that superficially looked right, but turns out to be some other strange species, and which they anticipate will be a massive drain on their resources well in to adulthood and probably for the rest of their lives. I think that is very sad.

The thing is, we don't all just have this one personality which we share... the stereotypical Asperger's personality, we are still ordinary people and we are still individuals. Relatively speaking, we are only a little a bit different. Your kid with Asperger's is still your kid and will be like you in some, if not many, ways. While they might need some extra support and understanding with some things, they can be less needy than other children in some ways too. They can still be wonderful people, they can still be happy, and they still have the potential to lead fulfilling lives as adults. The bad is balanced with the good because we are not sick and diseased... we are just a bit different.

Children with Asperger's face some specific challenges, and their parents are often frustrated by a lack of understanding, information, and support, so things can sometimes be worse than they really have to be. Some of the things parents and their children with Asperger's deal with include:

Not all of these things are issues for everyone and they are not inevitably massive problems.

Many parents want to help their children by enrolling them in treatment programs, usually either behavioural or pharmaceutical, in order to make them appear less autistic or to try and 'cure' them. I discuss these in more depth on the Treatment page, but in a nutshell my feelings about treatments are that if an individual is suffering and they want to be alleviated from that suffering and they are aware fully of the risks and implications of that, it is their right to choose what treatment they feel is appropriate for them, if any. When that individual is a child and adults are making that choice for them I think sometimes the child is forced to try and change in order to please other people and fit in, without their long term best interests being considered. It is my personal opinion that children with Asperger's syndrome must learn how to be people with Asperger's syndrome because that is what they will always be, and I believe that some forms of so called 'treatments' interfere with that.

That doesn't mean that they shouldn't have any help... Educating kids with Asperger's about what society expects of them and about how the majority of people think and communicate and interact is great... education is given freely and without expectation. They are given the information and it is their choice how, when and if they use it. There is a big difference between education and behavioural intervention... where you are applying either direct or indirect pressure on someone to be a certain way, like a puppet or a trained dog, often with no understanding or insight in to how they feel about it.

Of course, behaviours that are a real problem should be addressed, but the error should not be made of confusing the needs and wants of the child with the need and wants of the people around them. Behaviour that differs from the norm is not inherently bad just because it is embarrassing or mildly inconvenient or fails to meet peoples expectations for a person. I am all for making life better for people with Asperger's syndrome... but it has to actually be doing that.

You cannot Cure autism. There is no non-autistic person hidden deep inside that can be made to surface or that would be left behind should the autism go away. Forcing a person with Asperger's to live and behave like a neurotypical person does not make things easier for them, it makes it harder.

Neurotypical parents of Asperger's children should particularly make sure:

  • They are not forced in to social situations they cannot cope with.

  • Their cognitive and sensory experiences are respected.

  • They are not over protected or treated as if they are unwell.

Some parents find that joining a local support group is helpful. If there isn't one near to where you live you might be able to consider starting one up yourself.

The National Autistic Society - An introduction for parents and carers of people with autism and Asperger syndrome
The National Autistic Society - Services for parents, carers and families
The National Autistic Society - Ideas for family days out
The National Autistic Society - Parent to Parent Line
Parents and Carers of Autism

Parents with AS

There is a support organisation on the web for those who have had negative experiences of having an autistic parent called ASpar. While I think there is a role for such a support group, I think there is a fine line between discussing the impact of Asperger's on parenting and actively constructing negative propaganda against Asperger's parents. I personally disagree with many of ASpar's assertions and assumptions about parents with AS because they are based on unsupported anecdotal evidence about people, most of whom may never have even been diagnosed with Asperger's. It is one of the goals of ASpar to make the legal system biased against people with Asperger's Syndrome in child custody battles. The creator of ASpar describes herself as 'a sociologist with a Disability Studies background, and a commitment to Disability Rights', but I find this difficult to reconcile with the bitterness, prejudice, and emotive, irrational reasoning that is employed by this organisation.

ANY family of any neurological make up can have the sorts of issues and problems described by ASpar for a great many different reasons. Also, many of the characteristics of Asperger's overlap with other conditions and causes. When diagnosing Asperger's it is not just the diagnostic criteria that are used but also the ruling out of other possibilities, such as mental illness, social phobia, trauma, depression, and stress. It is also possible that someone with AS could make mistakes as a parent for other reasons and not because they have AS, just as neurotypical people do everyday.

Family support and guidance, information and advice, should be available to everyone, and I would have hoped already that the courts would assess someone's suitability to have custody of their children on a  case by case basis and take account of the child's needs and wishes. It is unnecessary to single out people with Asperger's for extra special scrutiny and judgement, not to mention unethical and illogical.

When someone has a disability that could cause them difficulties appropriate support should be available. Where that support doesn't already exist it is worth discussing what sort of support parents with Asperger's might particularly need. That discussion should include people with Asperger's rather than exclude them and it should be constructive and non-judgemental. Anything less than that would be simply counterproductive.

Asperger's parents of neurotypical children should particularly make sure:

  • They get adequate opportunities for social contact and experience, (can bring friends back to the house etc.)

  • They get hugs and cuddles (if not from them for sensory reasons then from another suitable family member, and with them some other way of expressing affection and reassurance is established instead).

  • They have allowances made for the fact that they are children (people with AS can tend not to discriminate about age, which is good in some contexts but can potentially result in high demands and expectations of children's reasoning abilities and behaviour).

Asperger's parents could also potentially benefit neurotypical children in some ways:

  • They encourage autonomy and independence.

  • They are less likely to pass on prejudiced views and obsessions with status.

  • They can pass on values such as honesty and accuracy.

  • They actively share information rather than preferring to keep conversation light and shallow.

  • They would put the needs of a child before social conventions or keeping up appearances.

  • They tend to accept people as they are, and this would include accepting and encouraging the development of a child's individuality without heavy parental expectation and ambition.

  • They think carefully about things, consider details, and care about doing things the right way, and this could apply as much to raising children as to anything else.

Asperger's parents also have much to particularly offer Asperger's children:

  • They can pass on coping strategies and learnt adaptations.

  • They can provide a safe home environment free from social pressure.

  • They can genuinely empathise with and explain both the positive and negative aspects of being AS in an NT dominated world.

  • They can intuitively understand an AS child's needs and manner of communication.

  • They can provide them with a sense of identity and belonging, rather than them feeling 'wrong' or 'odd'.

  • They can be role models.

Sometimes people are not sure if they are Asperger's or whether they have just learnt traits and behaviours because one or both of their parents are that way. Some even go as far as blaming their parents for making them 'like them'. However, neurotypical people have an innate ability to master social situations and are naturally inclined to think and communicate in neurotypical ways. Nobody can make you autistic, and just having the odd trait or characteristic doesn't count because that's almost everybody anyway.

Ultimately, I think Asperger's parents are just as capable of and suitable for raising neurotypical children as neurotypical parents are of Asperger's children. Being different is not a problem. Lacking willingness to bridge your differences would be.

C.A.P.: Celebrating Autistic Parents
Yahoo Group: autieparents

Further reading on family life available from Amazon.com or Amazon.co.uk

Further reading on childhood  from Amazon.com or Amazon.co.uk

Further reading on adolescence from Amazon.com or Amazon.co.uk

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