Second opinion?

Hi,just to let you know your not on your own. And yes I would most definitely get a second opinion as I'm looking to do that for my 12 yr old son. Who because of Cahms doing nothing apart from sleeping tablets it's now one year later gone to child protection just so my son can get the right help.yet they are refusing to see him again as many professionals think he has psychosis. He has 18 proffessionals involved and he's gets knives out on me is violent see and hears things.the list is endless. Yet the answer for a year has been. Routine structure bounderies etc... I recently been cut with the knife but again as long as he goes to school that's what matters.i as a single parent must be calm when he's attacking me. It's a disgrace. I hope you get help soonl

NAS18906 said:

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He is also scared to open his bowels and goes for months without going sometimes.

Presumably the GP is doing something about this? That sounds extremely unhealthy and possibly downright dangerous. Is the months bit literally true or might he be doing things in private?

Constipation also makes one feel mentally rubbish. It gives me headaches and makes me more irritable. There is a vicious circle of stress and physical discomfort going on that needs to be unpicked.

Have you looked at dyspraxia as a possible contributary condition? This is another common thing for people with autism. Is he able to use a computer rather than having to use a pen?

Being on an autism website, does months actually mean months? Literally ?  If so very dangerous medically and needs urgent help A&E !

Or is this a figure of speech ?   Such as "just two seconds" when someone means several minutes.

So months could mean a few days.

Lorri642 said:

He is also scared to open his bowels and goes for months without going sometimes.

Presumably the GP is doing something about this? That sounds extremely unhealthy and possibly downright dangerous. Is the months bit literally true or might he be doing things in private?

Constipation also makes one feel mentally rubbish. It gives me headaches and makes me more irritable. There is a vicious circle of stress and physical discomfort going on that needs to be unpicked.

Have you looked at dyspraxia as a possible contributary condition? This is another common thing for people with autism. Is he able to use a computer rather than having to use a pen?

NAS18906 said:

In my opinion, anxiety in autism is mainly caused by living in a world that makes little sense to the individual. If one does not understand how social interaction works then one will have a series of misunderstanding, disagreements and tellings off that reduce the individual to an anxious state because no matter what they do it seems that nobody appreciates what one is doing.

In addition to that, the autistic world is a state of isolation that does not learn what normal thinking patterns are. The thinking patterns that develop in this isolation might be similar to being "stir crazy".

The autistic person needs to be coaxed (gently) out of that state by people with some understanding of what the problems are and what needs to be taught to the person to enable them to do things in a more socially acceptable manner. We have to be taught things that most people do intuitively, we can't be natural communicators but we can learn and be trained to get some skills that bring us into a better balance with the world at large.

So, you do not try and reason with the anxiety itself but you do try and reason with the underlying problems that lead to that anxiety.

All of the above is only the opinion of an adult with autism who has had to deal with anxiety and depression that arose prior to and since my diagnosis.

I am in close agreement with you.  Social interaction is full of unwritten and unspoken rules, that most people know instinctively.  But autistic people are unaware of these rules and they only become aware of them when they break them.  So they have to be taught explicitly what these rules are and how to apply them.  One unwritten/unspoken rule is that in social circles, one never talks about these rules because people think you're strange.

One problem I have is in deciding how/when or whether to join a group.  I usually get it wrong.  When I try to join a group or conversation, people make it clear that I am not welcome and "get lost, just go away" etc.  When I don't join groups I get accused of being snobbish or thinking that I'm too good to mix with them.  This problem with social mixing has been with me my entire school and working life.

With my son, I think what you say is correct, but much of his anxiety is around certain things not as much people. His fight or flight is over reacting. He has many phobia's and is scared to do things other children think nothing of. He is scared of open spaces. If we go anywhere for an outing, we have to follow other people as he feels safety in numbers. He is also scared to open his bowels and goes for months without going sometimes. I have to clean him up sometimes up to around 10 times a day. He has separation anxiety and I have a hard time even leaving him with his grandma, he will shake and cry, grab hold of me for dear life! Sometimes it will seem a little better, and then boom, he's back to square one. People have never understood and have tried to talk him around, while im stood there thinking you think i havent tried that a million times lol! CBT has been sugested, and although I am sceptical, it's worth a shot, as you say, it needs to be someone that understands. I myself am not autistic and it is all sometimes alien to me even though I try my hardest to work out what is happeneing and how to handle it, but I think thats one of the key reasons we need a diagnosis, so I can then arm myself with the tools to help him.

Thankyou Spirit, Yes I will wait for the report for total clarity. Im in Cornwall. The ADOS test was performed by CAMHS. I use the term "test was performed" very loosley :0 Others here have told me, he should of been seen over time, not just in and out in one session, as their children were. When I get the report, If it states the things I think it will ie what he was saying to me, then I will go back to the initial CAMHS lady we saw and explain my concerns to her. Yes, it's much more than geting a label to me, it's future services/resources etc. He is now home schooled as was too anxious to go to school anymore so educational psychologist is probably not an option. 

In my opinion, anxiety in autism is mainly caused by living in a world that makes little sense to the individual. If one does not understand how social interaction works then one will have a series of misunderstanding, disagreements and tellings off that reduce the individual to an anxious state because no matter what they do it seems that nobody appreciates what one is doing.

In addition to that, the autistic world is a state of isolation that does not learn what normal thinking patterns are. The thinking patterns that develop in this isolation might be similar to being "stir crazy".

The autistic person needs to be coaxed (gently) out of that state by people with some understanding of what the problems are and what needs to be taught to the person to enable them to do things in a more socially acceptable manner. We have to be taught things that most people do intuitively, we can't be natural communicators but we can learn and be trained to get some skills that bring us into a better balance with the world at large.

So, you do not try and reason with the anxiety itself but you do try and reason with the underlying problems that lead to that anxiety.

All of the above is only the opinion of an adult with autism who has had to deal with anxiety and depression that arose prior to and since my diagnosis.

Waiting for the report sounds sensible. You have time to clarify things.

It can be really confusing with labels/diagnoses. Sometimes is doesnt always help to have a label; it is how one manages the challenges that matter- although sometimes it is very helpful to have a label (access to help, patient/family understanding). Sometimes diagnoses may change over time.

I'm not sure where you are based, but it can be confusing as to who diagnoses what. Where we are, the diagnosis of ASD/processing disorders are made by the development centre - involving paediatricians, OTs, SALT.  Anxiety, depression,ocd etc diagnoses are made by CAMHS, and conditions such as dyslexia/processing/dyspraxia made by the educational psycholgist. In my experience, the educational psychologists in state schools seem to screen for such problems but a more thorough picture of any problems needs to be paid for. 

It is a shame that these different organisations cannot operate more closely. One problem I found with my son who has social anxiety/asc, is that after 3 appointments at one place then 2 at another and still being at the stage of him having to answer questions/do tests with no diagnosis made/suggestions as to how he could be helped, he became very reluctant to come to further appointments.

Good luck!

Thanks for your reply. I understood perfectly well though that he said he did not like to diagnose autism, which means he will not give a diagnosis. He will also not reffer for an academic test, that much is clear! He says my child is dyslexic, he is not. He thinks anxiety caused by ASD can be reasoned with, it cannot. I do feel that I got his opinion, but will maybe wait until I get the report to see exactly what it says.

I think that you need to get the first opinion before you go for a second opinion. The diagnostic process can be hard to understand so don't prejudge the doctor's conclusions.

If you do need a second opinion then there are lots of discussions on the forum already - see community.autism.org.uk/.../"second opinion" for threads which relate to that. If you join an existing discussion then you might get more replies from people that have been through that process.