Mental Health Awareness Week ! You are having a laugh.

Oh gosh, so where do I begin ? This has been one of those weeks ! Sometimes I can ease the stress of my harder weeks with a large bar of chocolate and a glass of wine. This is not one of them…

I have two teenage daughters, both of whom suffer from social anxiety but with varying levels. The eldest daughter is nearly 17 and I am fully aware that she experiences anxiety when dealing with certain situations, for example she recently had a job interview and she felt very anxious about it. That’s normal right? I think it is and she understands that it is too. She knows that if she has to attend several interviews that the anxiety will ease and she will know what is to come and what to expect. I am not down playing her anxiety, it’s not easy. When I was in a high powered role at work I often used to get very anxious about meetings. How would I get there? What if I got lost? What if I was late? Who would be there? However, for both of us we understand that these feelings of anxiety are normal and also that some level of anxiety is good for you. As a family we were recently able to have a tour of some African elephants and we were told that they too needed some level of anxiety or they became bored. So anxiety is not necessarily a bad thing, you just need to understand it.

I am also aware that I need to respect her boundaries, she is at that age when she is becoming an adult and she needs some privacy and so I only get involved when she asks for my advice or needs my help. I try to get the balance right but I am sure that at times she wants me to interject more often but sometimes I miss the signs. I know I don’t always get it right, I know because she tells me. Ultimately though I feel that she has enough people around her that she can turn to to ensure that she is safe.

The other teen in my life Bonnie is soon to be 14 and she is also experiencing anxiety but because she is home schooled and autistic we spend a lot of time talking about her anxieties. Some of them seem to be crazy (some drive me crazy), but they are real big issues to her. The things that I find hardest about her anxieties are that they seem to have really bad physical effects on her. For example if she is worried about something, even ever so tiny like the length of her hair, she obsesses and obsesses about the problem until she feels faint, her heart races, she sweats and has a headache. She also can experience psychological feelings and because I am not a professional, I really worry that I am not giving her enough.

So this week we visited the local GP. Bonnie explained how she was feeling and the doctor suggested that she be referred to CAMHS. As you may have discovered from reading previous blogs, Bonnie and I are not big fans of CAMHS. I still have yet to find anyone with a positive experience of CAMHS so for Bonnie this was not an option. We did ask for advice on private autistic counsellors but the doctor was unable to suggest anyone. In this day and age ? (big sigh). We talked about medication to help but due to the fact she is under 18 he could not prescribe this and that she would need medication from a consultant. As Bonnie’s intelligence levels are very high she is aware of the downsides of such medication, having researched this area thoroughly, and she is therefore very wary and would only use medication as a last resort but she feels that she is at that last train station and where does she go from here. It seems to her as though all avenues have been shut down and that she is left alone.

So we talked more about counselling to the GP and Bonnie explained her fears that she felt that counsellors would twist her words and not understand what she was trying to explain. The GP then asked her “Are you suicidal ?” “No” she replied. “But what if you were, would you know where to get help from?” “But I’m not ” she replied “Can you talk to mum? if you can’t, then you can text her from another room” Oh seriously this dude was pressing every button for me. Bonnie replied “I can talk to my mum and once again I am not suicidal”. We took his couple of cards with suggested online counselling, which by the way Bonnie tried the minute we got home, but that they were hopeless, with no understanding of autism and just left her feeling more isolated. What Bonnie found unbelievable though was that she had told this GP that counsellors would twist what she was saying and not really listen to her and here was a prime example of that. She was flabbergasted that he continually asked her about suicide. By the way GP top marks for putting the thought into her head, you did a great job there, really helpful (yes that is my sarcastic voice).

I know what he was trying to do was cover himself. He had no time to discuss these issues with her, he could not provide a clear path for her to follow to get help, he was clutching at straws and trying to cover himself by saying that he had discussed what she should do if she was suicidal. Oh that’s great for him if the sh@t hits the fan and she does try to kill herself but what about her ! To top it off we are in Mental Health Awareness Week in the UK, with programmes about the help you can get etc. Well where is that help ??? The programmes that have been shown highlight the long waits that people have to see the counsellors, they quoted 14 months in one programme for CBT counselling https://www.nhs.uk/conditions/cognitive-behavioural-therapy-cbt/how-it-works/. 14 months wait for a
mental health issue is disgusting, no wonder the GP is talking about suicide and no I am not being sarcastic now, I am angry that we are still failing those in society that need help.

So there we go, that’s my week. It’s been a pretty horrible one for me but an even more horrible for her. I would like to end on a positive note though so any suggestions that you have on coping strategies for her would be really appreciated. We have tried herbal remedies, writing in a diary, yoga, exercise, diet, talking etc and these all help slightly but not enough so I am open to any comments that you may have. As Einstein said ” Anyone who has never made a mistake has never tried anything new“.

When the ‘experts’ let you down.

Supporting my daughter through her journey with Asperger’s has meant that sometimes I have to put my hand up and say that I do not have the answer. In these circumstances I seek out support from ‘experts’ but that support is in my experience practically non existent. The problem is that the ‘experts’ also have short comings and for my daughter she learnt this the hard way. One area of so called expertise is CAMHS (Child and Adolescent Mental Health Services).

These days many people will be very familiar with CAMHS, https://www.nhs.uk/using-the-nhs/nhs-services/mental-health-services/child-and-adolescent-mental-health-services-camhs/ it seems that not a week goes by when I don’t have a conversation with someone about CAMHS. Last week it was a grandmother who has a grand-daughter seeing CAMHS for issues relating to self harm and an eating disorder. It should be a valuable department assisting young people with their emotional or behavioural well being and yet I have not heard one positive outcome as a result of an adolescent seeing CAMHs. For us the experience started like this….

My daughter’s physical and mental well being greatly improved once I decided to home school her. Everyone that meets her now, some three years later says that they cannot believe the change in her. However, she does suffer from depression at times. I would class this as mild depression and it could possibly be SAD (Seasonal Effective Disorder) https://www.nhs.uk/conditions/seasonal-affective-disorder-sad/ So one day she approached me, she was in a very bad way and I had noticed it building up for some time, and said that she needed help, help that was beyond what she thought that I could give her. She explained that she felt very low and that she could not shake the feelings, often crying and breaking her heart with the sadness. I told her that it was probably worth visiting the GP and that I felt that at her age, she was 11 at the time, meant that they probably would not prescribed anything but that they may have suggestions of help. Their suggestions was CAMHS.

The waiting list to see a professional from CAMHS is several months in our area and so this gave me time to research them and ask other people about their experiences. The feedback was not good, usually met with a comment of “don’t waste your time CAMHS are useless”. This was not very reassuring.

The time came to meet the counsellor and she came to our house, because I had explained to our GP that my daughter’s anxiety was heightened when she went to unknown places. As per previous experience of professionals in the field of autism the CAMHS counsellor and her trainee arrived late, therefore already creating tension, anxiety and unnecessary stress.

My daughter did not want to talk to the counsellors, after all she does have Asperger’s and as anyone reading this blog will know it was pretty obvious that I would have to be her voice initially, these were strangers. So I gave an explanation of why she was attending the meeting. I gave examples of when she was really low, explaining that it mostly happened on dark dreary days and that on sunny days she would present completely differently. I had also explained to my daughter that as she was entering her teenage years it was not uncommon to have these feelings of self doubt and not being able to shake that dark cloud overhead.

They asked me to explain more symptoms that she was displaying, and with some minimal contribution from my daughter, I casually mentioned that she had a thing about washing her hands five times. Well it was like I had opened a magical box, they moved forward in their seats and started to ask more and more questions and what would later become known as ‘The Five Thing’. The five thing, they decided was OCD (Obsessive Compulsive Disorder) https://www.nhs.uk/conditions/obsessive-compulsive-disorder-ocd/. I groaned inwardly, not another thing that she has to deal with. How much could she cope with. The counsellors then asked her to complete a test, which I could remember from my psychology A Level days. The questions were for example ::

I make friends easily.
 Disagree strongly (not at all me) 
 Disagree a little 
 Neither agree nor disagree 
 Agree a little 
 Agree strongly (this is very like me)

The outcome of the test provides results that give your approach towards certain areas and so the counsellors took the results of the test and agreed at the end of our meeting that we should all meet again in a couple of weeks.

The next meeting with the same counsellors, one of whom is an autism expert, was spent devising a plan on looking at how we could handle ‘The five thing’. I remember thinking, Oh Really?. I mean I know that they have studied and trained to deal with these adolescents but it was not what we wanted them to focus on. I had no choice though other than to run with what they thought was best. The first part of the plan was to write down all the things that she did five times, well that was quite a long list, it included things such as turning light switches off and on, moving objects. She had to list them in order of what she thought would have a more severe consequence ie filling the cup with water and emptying it five times meant that something bad would happen but no so bad as if she did not turn the light switch on and off five times. The second part of the plan was that my daughter would walk to the kitchen with the trainee and fill a cup of water and then tip it away. After she had done this for five times and the counsellors had a brief chat, the trainee then said that she was to now fill the cup but not tip it away. She was to take the cup of water into the lounge and write down on a piece of paper her anxiety levels. Well obviously they were going to be high, two strangers in your house, testing you, observing you! After 10 minutes she was then asked her anxiety levels and the process went on until 20 minutes had elapsed. The counsellors then decided that my daughter needed to practise this several times a day to break the habit and desire. I was to sit and record the anxiety levels and what we had done during the process to try and take her mind off of the task ie reading, drawing. We agreed to meet again in another week, but this time it would only be the trainee.

They left our house and my daughter said “What are they doing ? This is not what I wanted help with, and by the time they run through this process for every area on my list that will take weeks if not months”. She was right. I was thinking oh great how do I fit this into the day, I have two other children, two goats, 3 chickens, 1 rabbit, 2 dogs to look after and I knew that the process would take much longer than 20 minutes per task because I knew that I would need time to prep my daughter before and help her cool down after. It was also not the only area of support that my daughter needed help with, and let’s not forget it was still not dealing with the issue of her depression which was the one thing that I could not help her with. I was so cross that they did take any time to consider all the other areas that I had helped her with such as her anxiety, sleep and sensory issues. Had they not seen the pile of books that I had bought. The OCD was something that with the help of a book and some internet research that I could have tackled. Keeping these opinions and thoughts to myself I told her that it was a good idea to try it and we would be positive about it and so that’s what we did, we tackled it head on.

By the time we next met with the trainee, I was exhausted. My daughter was exhausted. We showed her the outcome of the tests and how the longer time went on the more the anxiety reduced. I thought that she would be ready to move on to the next item on the list. Oh no, we repeated the task again and spent another week recording the outcome.

At the beginning of the next meeting I explained that this process was not what we had expected that we needed help dealing with depression. The trainee said that we had to stick to the plan but that she was also concerned that my daughter was hoarding things and this also needed to be tackled. Now I have an older daughter and I strongly believe that they all go through a phase of hoarding. They don’t want any drawings to be thrown out, or any stones that they have collected from the playground to be returned to the outdoors. It is part of who they are. They are free things that they find or make and turn into magical items. So I could understand why my daughter did not want to get rid of some of her items. Even an old chocolate box can have a meaning. Mostly, they grow out of it though, it’s a phase. The trainee however was instant that the next time she came she would expect her to remove some items from her room and deposit them in the bin.

My daughter at this point had started to take a huge dislike to the trainee. I have noticed that she does this a lot. She starts off very neutral but once she has made an opinion of you then you are either in or you’re out, there is no in between. This lady was on the way out! My daughter knew what she needed to do because you see she is no idiot.

The next week we once again met and presented our findings. The trainee was pleased with the results and then my daughter went and produced the items and put them in the bin. The trainee thought this was amazing, the progress that she had helped my daughter make. I think we can all laugh at the stupidity of this trainee. The trainee was so impressed that she agreed that the next meeting should be held at the CAMHS offices, as my daughter had made such great progress. I mean come on, so what she really thought that suddenly my daughters original reasons for not meeting at the offices had disappeared ? What she really meant was that it was easier for her. My daughter was instant that we move on from the five thing and that during the next two weeks she would be tested on other ‘five’ issue problems such as the light switch. It was agreed but the trainee felt that it was too quick and that we needed to spend longer on this. She said that at the next meeting she would repeat the initial testing to ascertain if anything had changed in my daughters responses.

Here we go again, another week and another meeting. My daughter as I have already said is no fool. The test was presented to her and this time she answered with answers that she knew would get her out of the situation. So for example if it asked How often have you been bothered by feeling down, depressed or hopeless? she would choose an answer that was not all how she was feeling but what the trainee would be looking for. So not often would be a suitable answer to get the trainee off her back, without being too obvious.

At the start of the next meeting the trainee told us the outcome of the findings and she was super pleased. I bet she thought she was the most wonderful CAMHS counsellor ever. Well she was in for another shock.

We agreed that at this meeting I would leave my daughter with the trainee for the hour session. Progress hey. The counsellor had my number and would call if there were any problems. Fifteen minutes later my phone rang. “You need to come and collect your daughter, she has been extremely rude and she needs to leave”. I dashed back to the offices and ran into the meeting room. It transpired that the trainee was talking about Asperger’s and the pronunciation of the word was not correct. So my daughter pointed it out. Not horribly but in a matter of fact way. “You said Asperger’s wrong”. The trainee proceeded to tell me that this was rude and that perhaps my daughter would not want to return to the sessions again.

She was right! No she did not want to return and nor was I prepared for her to return. The stupidity of this trainee, she has been deceived by the results of a test that anyone could tell had been fixed. She felt it was acceptable to call an 11 year child rude because an 11 year child with autism had correctly pointed out that what she was saying was incorrect. Needless to say that we never saw the trainee again. We did receive a letter from CAMHS saying that they were pleased with the work that they had done and how they had obviously helped my daughter with some of her issues. Ludicrous, all they did was confirm to her that she has very little support other than her family and that so called ‘experts’ do not know what is best.

After all of this I explained to my daughter that the main thing was that we had tried. We then grabbed some books on SAD and did some google research and helped ourselves. We put our own plan in place to help her deal with it and she is in a much better place.

So whenever anyone mentions CAMHS I get a shiver down my spine and I say to them “try it, but you may find it isn’t what you think it’s going to be”.