Search This Blog

Thursday, May 26, 2011

A Post for Janet. Diagnosis or Not?

I have been unable to login or comment on this blog for the last week so have not been in a position to respond to a question in a comment below from Janet on the Normal? No Thanks post. I think it's such an important question./issue that it warrants a post of it's own. Thanks Janet.

Janet writes,  I have a 9 year old son who has never had a diagnosis, too borderline, and therefore has not had much in the way of intervention apart from years of speech therapy. He stims constantly, and when he was younger this went unnoticed at school, but I worry that he will be ostracised for it as time goes by. Paediatricians have told me to discipline him for his behaviour, but I feel it is part of some release valve for him, and as anxiety is already an issue for him denying him this would be detrimental. My question to you is, do you feel a diagnosis is useful, do you feel that access to services is worth the effort? We would probably have to see a new paed to go down that path.

My response is that a diagnosis is always helpful, particularly for children. Knowing the reasons for why people behave the way they do allows us to understand them better. With that awareness can come compassion, assistance and for the child self acceptance. Something children without the diagnosis are at risk of not getting, worse still, being harmed by unrealistic expectations and confusing punishments. Having a diagnosis opens up a world of information, treatment and access to others who can offer support and guidance. And importantly your son will be able to make connections with other ASD community members. This will increase his capacity for finding optimistic role models and peers, and to develop a positive sense of self worth.
I think the issues you raise in the comment are evidence of how badly things can go for a child who meanders through the school system without a diagnosis. Misunderstanding, admonishment, criticism and what must be an unrelenting confusion for the child. So yes I think a diagnosis, if genuinely warranted, is important.
Janet I really hope you read this post. I want you to know that I took your comment and question seriously as it is a topic I feel strongly about. I will be interested to hear your thoughts on what I have written. There is so much more I considered saying, but I am conscious that this may be difficult to read, and could raise mixed emotions. I am sure there will be wisdom shared by others to give you some more food for thought.


  1. I absolutely agree with Sharon's thoughtful response to your question Janet. I think she's done a very good job of covering the reasons why it really is in the child's best interests to get a confirmed diagnosis. I'll only add a few peripheral points:

    You may find that by seeking a confirmed diagnosis, that it turns out your child doesn't have autism but some similar condition that perhaps is presenting rather similarly to autism, and that related condition needs a different approach than either autism or your current approaches to his behaviour. I'm not saying it isn't autism - not at all - I'm just offering up another reason why seeking diagnoses can be very useful.

    There's another general reason that a diagnosis is a good idea: It provides you and your child more options (and I don't just mean access to services): Just because you have a confirmed diagnosis doesn't mean you have to act on it (maybe join the community, access the services, etc), but without the confirmed diagnosis that choice is limited and in some cases unavailable. So no matter how you may feel about the label or the diagnosis itself - and perhaps reject it later as some people choose to - it at least gives you more options in your and your child's life.

    One more point. However you may feel about your child having a confirmed diagnosis, there's a rather good chance that your feelings will change in time after the diagnosis. By that I mean, that after a confirmed diagnosis for a while you will very likely find your attitude towards the diagnosis and the world that opens up with it, changes for the better.

    I wish all the best for you and your child, no matter which path you choose.

  2. Janet, one of the things to keep in mind is that your child will likely end up receiving a diagnosis of some kind, and it may be the wrong one.

    For instance, if his stimming is seen as a behavioral problem that he cannot stop, he could be diagnosed with a behavioral disorder and put on medication that would be entirely detrimental to him. Or, he could be diagnosed with anxiety and depression, and given all kinds of therapy that won't address the underlying sensory and communicative issues. If he is autistic, a misdiagnosis will cause him to miss out on therapies that will actually help with the underlying issues.

    I spent a good deal of my adult life being mis-diagnosed and working incredibly hard in therapy on things that I now know will never change. Having an Asperger's diagnosis allowed me to work on what I could change and let go of the rest. It was hard to make that shift in mid-life; I think it would have been much easier when I was younger.

    So I urge you to leave no stone unturned in getting the proper diagnosis and assistance for your child. Not every professional knows what they're looking at; many of us with Asperger's flew under the radar for years. Find one that will do a proper assessment so that, whatever the diagnosis, you have all the information you need.

  3. Thank you so much for the comments, I have felt very much alone where my child is concerned. As all mothers, I want only the best outcome for him, he is a quiet and gentle child, and I sometimes think that if he had some difficult behaviours medical professional support would have been more forthcoming.
    Mind you, we have had challenging behaviours also, but these have been more of an issue at home and a lot have resolved with time and intervention strategies. I also carry earplugs with me everywhere, and leave a pair with his classroom teacher, it helps when noises distress him. We had a supportive speechy, but once his language skills developed he ceased these classes. His language is still significantly behind, as is his ability to interpret meaning in situations with others - for example he cannot fathom why the rest of the family finds "funniest home videos" funny. All he sees is people being hurt, and it upsets him. I feel a good deal of his ongoing anxiety is related to this inability to read people and situations.
    Rachel, your comments hit home for me, as the paed put him on an antidepressant for anxiety, treating the symptom not the cause, which we had to abandon due to side effects. I was somewhat relieved to abandon medication in any case, as I was very worried about medicating my child, but also felt torn that he was/is suffering, and I am not actively intervening.
    Currently we have no support services in place for him apart from the occasional paed visit and remedial support at the school, and I guess I feel that he deserves more than is currently offered. I am afraid of the "powers that be" trying to modify things like his stimming, while I see it sets him apart from others he does this when happy or excited, and to deny him this feels like removing his ability to express his joy. I want for him to "fit in" but more than that I want for him to be happy and confident, and self accepting. Janet

  4. Hi Janet, so glad you saw my post. I agree that your son deserves more. He certainly does sound worthy of an assessment. Is it is the case that he does get an Autism diagosis you will be his best advocate. Like me, you will be ablt to talk to prospective service providers about your own philosophical perspective on treatment which will help to make a choice in who you go with.