20 month old with early ASD signs, doctor suggests alternative reasons

I would be surprised if James ever returns to this forum.

I appreciate longman's concern but I am quite sanguine about my continued support of the forum and the people that turn up here looking for help.

In this case I am aware that I have offended the OP by suggesting something that he does not want to hear. One of the problems of the forum is that I/we keep being too blunt for new (and old) posters of questions.

My understanding now (with 20:20 hindsight) is that the OP has been traumatised by the suggestion that his son is autistic. He believed that this is a catasptrophe of the greatest magnitude and he is therefore in a state of great distress. I have made his anxiety even worse by suggesting an even worse catastrophe - that he may possibly also be affected

A diagnosis for the regular members of the forum is no such catastrophe and we are fairly comfortable with this knowledge about ourselves.

The problem at this point is how to help James through this crisis and help him work out whether or not his son could benefit from the label and additionally whether he could benefit from the insight that a diagnosis (one way or the other) might bring. He needs to be helped through the stages of denial, anger, grief and acceptance that can accompany the momentous shock that followed the suggestion that his son may have ASD.

In hindsight, my post was too blunt and tactless and I think that Technophobes response may have come across as antagonistic and angry. This is not anyone's fault but we can look back and try and learn how to be more sensitive in trying to imagine the situation from the OP's standpoint.

In summary, Technophobe did not make an error of fact but rather an error of tact for which he should not suffer any anguish as this is just part of the life of a person with autism. James is reacting very understandably given the widespread fear of what many people think that autism means, I hope he reads this and appreciates that we are trying to learn from these encounters and that he is very welcome to return to the forum.

Though I said I'd gone I've kept an eye out because people are still getting hurt.

There just aren't enough people on here to provide support to enquirers. Most of the key respondents have gone.

It is very brave of R'socks to persevere, but I'm concerned you are just going to get hurt as in this case.

While the online community is at a low ebb like this, it is really beholden on NAS to make people aware of a (temporary?) difficulty. But NAS are still encouraging people with problems onto the site in the hope that, having got rid of the old contemptibles, there will now be a rush of 'new blood' eager to fill the vacuum.

That might indeed happen. But I do think it is important to appreciate that the old contemtibles trying to stay on in this now very toxic environment are going to be very vulnerable. I also feel sorry for JamesMS being led to believe he could access an online community in the current circumstances.

There have always been sparks because parents coming on here think we are some kind of formal volunteers group that can answer any question (when in fact we are here for peer support ourselves, and are being taken for granted by NAS), but at the same time we are being expected to be perfectly tactful, which is hard when we are put under constant pressure from desperate enquirers, denied any support, and then picked on incessantly by the mods for the slightest hint of political incorrectness.

It couldn't go on for ever like that.

Yesterday I took up these concerns with the Marketing Director who responded to my complaint on behalf of Mark Lever. He says

"Once again, I hope that you will continue to make use of, as others do, the online community that the NAS's provides".

This in spite of telling him it is currently lifeless. NAS thinks providing the space is all there is to creating an on-line community. They have no concept of the membership creating it, nor of anything changing when the bulk of the membership have left. They think it will magically heal in a few days.

So people like JamesMS seeking help will get a raw deal. People like R'socks being incredibly loyal will get hurt. And people like Technophobe23 will suffer from seeing the sharp edges of exchanges on a nearly dead online community.

And NAS (or "the Nas's" as the Marketing Director calls them, so like another word I know) wont lift a finger to help.

NAS18906 said:

Hi Technophobe,

I made that point earlier but tried to bit a bit more welcoming to the new member who is obviously really scared about his son. He needs to be informed and welcomed more than anything else. I have probably already upset him with my earlier post so I would ask people to be a bit more friendly.

Sorry. Only stating facts as I understand them to be. Was I wrong in fact? Or was my reaction to what I perveived as a gross misunderstanding of AS / ASDs where I went wrong?  I'm a bit sensitive about this whole area of 'mental illness' vs neurological variation just now, having only just been diagnosed. It makes me question a lot of things. Finding anyone referring to 'me' (of course I am completely aware that the reference was in absolutely no way personal) as suffering from a psychiatric illness hits soemthing of a nerve.

I have to say that I find the attitude of the person we seem to have offended excessively touchy. There has to be some give and take, and for somebody to 'turn up' on the forum and almost immediately tell other members how useless they have been isn't the way to get the best out of it!

Please Recombinantsocks, do not let this site destroy you like it has destroyed everyone else.

I appreciate you trying to keep up the good fight, but you are practically on your own. Anyone else trying to provide help is new to it, and hasn't been hurt yet.

The person who replied to my complaint about conditrions here, who wouldn't give his role and tried to exchange on jolly first name terms - I've done some research - he is the Director of Marketing.

NAS is all about marketing image. They are still marketing this site as an on-line community after busting it up over the last three months, I think quite intentionally to remove those of us at the abler end, because we don't fit the marketing image.

Nor should you keep getting worked up that it might be our fault that everything has collapsed because of the nature of our condition. It collapsed because Marketing wants rid of us, and isn't bothered about the fact there are now hardly any community members left to answer all the desperate questions.

Nor is it fair on people still hoping this forum has the answers, like JamesMS. Most of the element of the forum that helped people have left. And I don't think JamesMS realises that he is expected to stick around and answer other people's questions.

While I admire you for trying, you cannot do this all on your own.

Hi James,

I am sorry that I have distressed you. It was not my intention to do so but I have done so so I am sorry.

You came to the forum to ask whether your child's behaviour might be due to bad parenting or to autism. The general opinion seems to be that autism is a candidate and that you are not to blame for bad parenting. Neither would you be to blame if he had inherited autism from you. I do not blame my father who, in hindsight was autistic, from passing those traits to me.

I have not tried to diagnose you with an illness, psychiatric or otherwise. Autism is a useful label that descibes a set of behaviours or traits that lead to problems with social interaction. Someone with autism is likely to encounter some difficulties in social situations - in school, in the family, at work or even on internet forums! Autistic people tend to be undiplomatic, obstinate, argumentative, excessively rational and slightly more susceptible to consequential mental health disorders like depression, anxiety or even in some cases PTSD (as a consequnce of bullying). Autistic children are normally bullied at school for their different behaviours and the bullying can have consequences if not nipped in the bud.

I am not taking any meds or receiving any treatment for my autism, I have received treatment and help for depression and I reckon that some of my behaviour is anxiety driven and that I may even have suffered PTSD due to the conflicts that I have endured before I was diagnosed. Mental health issues should not terrify you, help and treatment can be found for many MH issues that can arise from autism but I repeat again that autism itself is not an illness. MH issues are an everyday reality and should not be stigmatised.

Having a label of autism is not a terrible thing. It can head off issues before they get out of hand. The only treatment required if your son has this label is that he needs extra positive and understanding parenting and a good school that can work with his traits rather than trying to beat them out of him.

I hope you can read this with the goodwill with which I have written it. I do not wish to upset or trample over your feelings which I sense are pretty raw at the moment.

To be honest JamesMS, you've been unlucky. A lot of regulars are abstaining at the moment so there is not much help around. I'm supposed to have left.

20 months is a bit early to see anything for certain, but all the same you ought to follow the correct procedures, just in case. So go along with any opportunities that present themselves.

There are background issues that you need to be aware of, like other family members, which it was pertinent for someone to have pointed out. Also many are sensitive to common misunderstandings of autism.

Hopefully when you do need to consult this site there will be a lively community here again. Some of us regulars will not be around (the moderation has become horribly invasive). But I'm sure there are new people who will pick up the loose ends and will adapt to having every word they use picked over by the mods for other unintended meanings.

So don't give up.

Thanks.

I've posted two queries on this forum looking for help in understanding my son. In return, I've had someone determined to diagnose me instead, complaints that I don't fully understand a subject I've already admitted to being ignorant about, and total silence.

A truly delightful and welcoming community you have here. Rest assured I won't be firing off any more comments.

Hi Technophobe,

I made that point earlier but tried to bit a bit more welcoming to the new member who is obviously really scared about his son. He needs to be informed and welcomed more than anything else. I have probably already upset him with my earlier post so I would ask people to be a bit more friendly.

JamesMS said:

"....I might be suffering from a psychiatric illness and that I am responsible for passing it on to my son..."

Asperger's / ASD is not a psychiatric illness! Please do some research before firing-off such ignorant comments.

Hi again,

Can I suggest that you watch the "Born Naughty" programmes that were on Channel 4. They are available on their website. Each programme showed two children. One with autism and the other just needed better parental input. I think you will find it useful to see how autistic children are almost indistinguishable from naughty children but how both sets can be helped with parental input.

Hi James,

I'm sorry to offend, suggesting that someone has a condition can be unwelcome.

I am not suggesting that you or your son are psychiatrically ill. Asperger's (a high functioning variant of autism) is not an illness, it is better described as a personality type that can lead to certain behavioural traits. Many great scientists and explorers fit the criteria and I have managed perfectly well for most of my life in blissful ignorance that I had it. I have 3 degrees, nearly 100% continuous career with an exceptionally low absence record, a house a family etc etc and I am very happy to be aware that I fit the criteria. It is often an invisible condition that can only be spotted by specialists or those who recognise the signs.

Thank you Yasmin. 

recombinantsocks, I hope you will not take this the wrong way. 

I appreciate that you are trying to help, and if you were bullied I truly do sympathise because I know very well what that can do to a person psychologically. But I would ask you to think twice in future before trying to assess a person like you have done with me without being invited to do so, or encouraging people to engage in self-diagnosis with the AQ test.

You know almost nothing about me and yet you are theorising that I might be suffering from a psychiatric illness and that I am responsible for passing it on to my son. This is not helpful.

All I've done is list the things my boy does and does not do, and the advice I've had from a doctor. I'm just looking for people who may be in a similar situation as me.

although there might be other reasons than autism that are causing your son's behaviour, I wouldn't blame yourselves! 

I have a 12 year old, who was diagnosed with autism at 24 months, a six year old boy who was diagnosed with Autism at 23 months old, I have a 26 month old daughter who is going through the an assessment for autism too.

Maybe the doctor is just saying this, to see if even more interaction with your son improves things ( not that I'm saying you aren't giving enough!) I was told to go on a parenting course when my eldest was 18 months old to see if it was something I was doing causing my eldest to act the way he was doing. 

Never blame yourself though, I mean unless your son was left sat in a cot/chair all day and never spoken to or played with then I doubt it's your parenting causing this! 

Well, there are a number of ways of interpreting the events so far which are

1) you were bullied at school

2) you have some personality changes that you attribute to bullying

3) you have a child who is behaving noticably differently

4) You score 29 on the aq test

5) you are struggling with the duties of parenthood

My speculative interpretation would be

1) You were bullied at school because you stood out as being different somehow. You didn't fit in and have a lot of friends.

2) Your personality may be due to the same difference that attracted the bullies or may be due to difficulties consequential on those differences.

3) Your child has inherited your differences. People are much more aware of differences nowadays so your own (and your relatives) differences as a child would have been dismissed as eccentricity or non-specific strangeness.

4) A score of 29 is sufficiently far from "normal" to place you on the spectrum but you perhaps manage well enough not to require or qualify for an actual diagnosis.

5) A person with autism/Aspergers may well struggle with parenthood. It may not come naturally and you may be accused of being a poor parent.

Most of your story is my story except that I score a higher aq test. Most people with ASD are bullied at school. You can be unaware of why you are different as this is an invisible condition. I have a rich family history of eccentricity but nobody was diagnosed until me. Awareness of autism is growing and was unrecognised when I was a child. It is still normal to fiund doctors who cannot spot it and will dismiss the possibility out of hand.

The score of 29 does not mean that you do not have autism. It means that it cannot be sure one way or another so you know that you don't know whether you have autism.

Thanks recombinantsocks. Honestly, I would be delighted if it turns out that his issues are due to some cack-handed parenting on my part. For me this would be much better than the alternative, which is why I'm wondering if anyone else has had this suggested to them by a doctor.

I think we can rule out ASD as being inherited. Nobody in our families has ever been diagosed or shown any signs. I took an ASD test recently and scored 29. I understand the threshold is 32. My wife and I aren't particularly social as adults, but we were both very outgoing and social when we were children. Our changes in personality were down to some rather nasty school bullying.

Reading through the forums here, I'm struck by how many symptoms parents report struggling with that my son just doesn't do. He has always slept perfectly, has no issues with sudden changes in routine, has no sensory issues, has no problem with large groups of people, has no issues with food, isn't lactose intolerant, doesn't smash or break things, doesn't self-harm, doesn't eat non-food items and has never shown any signs of regression. 

He does have tantrums, but they are never unexplained and always because he's being forced to do something he doesn't want to do. His lack of eye contact seems to be circumstantial; put him in a room with his toys and he'll focused on them. Sit him up to the dinner table with no distractions and his interactions are better. He likes to run in circles in the living room, but if I open the door and give him the option to explore the house, he'll instantly choose the house. It took us only two attempts to show him how to get down the stairs safely before he picked it up. Today he literally pushed me away at the top of the stairs so that he could get down the stairs independently by himself.

Sorry, I'm rambling. Things like this give me hope and make me think my doctor might be right. Maybe he's just a little insular and bored.

Do not blame yourself or your parenting for his behaviour. Nobody is perfect and as long as your heart is in the right place and you are trying to do your best then what more can you do?

The next subject I will raise may be difficult to discuss. ASD is often inherited. Has anyone mentioned this possibility to you? This isn't a problem but it may provide some additional insight that may enable you to help your family deal with this best.

There is a free test at http://aspergerstest.net/aq-test/ that you and/or partner might try. The tool is often able to rule this possibility in or out of consideration but it is not anything like a proper diagnosis.