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”.



The Diagnosis will make it all OK.

When I talk to people about my daughter they usually have two questions that they ask, number 1 ) How did you know she had autism ? and number 2) How did you get her diagnosed? The order of these questions changes depending on who I am talking to. For most people it is question 1 first, but for those who feel that they too potentially have a child on the spectrum it is normally question 2 that comes first.

You see getting a diagnosis is extremely hard, especially for girls with Asperger’s and waiting times to see professionals vary depending upon where you live. I was recently advised that in the Bristol region wait times are approx 18 months for the initial consultation. Some people may feel that 18 months is not too long, but for someone going through the process it is a long long time. Especially if your child is at school and they have not recognised your concerns, meaning that until your child has a full diagnosis the school will only provide you with a limited amount of support. The other issue is that 18 months is the time until you get to see the paediatrician not the actual diagnosis. The paediatrician will normally require reports from Speech and Language, Occupational therapy, School, GP etc. By the time you go through the process from start to finish you are talking years! Yep years.

In our case I visited my GP armed with a stack of research and information that I had carefully digested. I had notes of her routine, behaviour, mental state, physical state. You name it I had it. I even made her take online assessments. I walked in armed with books and print outs so my GP could see that I was very serious about the situation. She referred us and our referral date was set 6 months later.

My daughter and I attended the appointment, which was an hour’s drive away, great start for a kid with sensory issues, followed by the usual from the receptionist “he’s running late.” Great for kids that need routine! I am an adult without autism and so I understand that these things happen but the anxiety that was building up within my daughter was not acceptable. I sat there thinking these are places and people that are handling these situations all day everyday, advising on them so why put their patients through this. If they can’t get it right how will I ever be able to support her. The other part of my brain thought, well she is going to have to deal with these situations for the rest of her life so lets start preparing her. Come on mum get supportive. Uhh! Caring, emotional parent versus practical tough parent, whilst being supportive at all times.

The paediatrician spent 20 minutes with my daughter talking to her and talking to me. He didn’t probe her for information he just asked general things about her well being etc and he was very good at making her feel at ease. He asked her about her likes and my daughter explained her obsession with animals in particular dogs and horses. At the end of the discussion he said, “Well this is one of the clearest cases of Asperger’s but I need Speech and Language and Occupational Therapy to back me up before I can give her an official diagnosis”. ” I suggest you read books by Tony Attwood as they are really helpful, especially anything that you can find on girls with Asperger’s”. “I’ll see you again once we have that information”

Here we go again.! How long will it be to get an appointment with these departments, and the answer was 6 months. Another 6 months. All through that time I felt a little bit of contentment that I was perusing the right path for her but at the same time a lot of anger that she was not getting support right away. Where were all the miracle workers who were going to support me, get banners out and fight for my daughters rights… at this point I am in hysterical laughter writing this blog. I’ll come back to this later on, bear with me.

Speech and Language allowed themselves an hour to spend with my daughter, with me in the room. The whole process was not too difficult but because my daughter was aged 10 I suppose it was a little more challenging than just observing her play, she was too old for that. They ran through a series of scenarios with her for example, they would show her emotion cards, one I distinctly remember was a man sat in his car with the window down, he had is hand clenched in a fist with a very aggressive look. My daughter had no clue that anything was wrong with this man. These were emotion cards that preschoolers would understand. She also talked, classically she talked too much, about her obsession with dogs and horses. I left the meeting feeling that it was very obvious and the report would back up what I thought. The report however that was provided 4 weeks later left me wondering if the Speech and Language therapist agreed with me or not. I am not an unintelligent person but the report was not easy to digest. It was not a magical report that once opened sang out the words “Yes,Yes you are right, you were right all along, of course she has Asperger’s”. It was a very clinical report full of technical jargon. My heart was telling me though that what I had witnessed in the session was clear for all to see.

Occupational therapy on the other hand were amazing. They talked to my daughter about the sensory issues, which I suppose at the time was one of the biggest problems. Hair cutting, hair washing, bathing, even cleaning teeth, the basic hygiene problems that were so challenging for my daughter on a daily basis. For me it was also the confirmation that these things which most of us take for granted can cause so much distress for others. I felt like another fist bump in the air, followed by a big sigh. It’s a double edged sword, you make progress and get confirmation of what you thought but you cannot loose sight that this is all so hard for my daughter. She explained about how sitting still for too long a period of time was not good for my daughter because it was sending her body into a sleep time state and that horse riding was great because it did the opposite. She provided a report for every sensory issue that had been raised and she provided options of things available to try to relieve the pressure and stress for my daughter. For example exercise balls to sit on to keep the core muscles moving rather than sitting on a chair, sensory toys to chew so that before my daughter brushed her teeth, her teeth would have a chance to become less sensitive, special toothbrushes for her to use that meant she could do the top and the bottom at the same time. Even explaining to me that for my daughter when she has a shower it can be painful as even though it may be the softest spray, the spray hitting her body could cause physical pain. I realised how oblivious I was to so many things that she was going through on a daily basis.

The second date came through to see the paediatrician for April. At the end of our last meeting he explained that he held a clinic a bit closer to our home so that made our journey slighter easier. We walked into the room and within 10 minutes we were out. During the 10 minutes he asked my daughter how she had been, he said that he had reviewed the information from the other departments and that she did have Asperger’s. He said it was one the quickest cases ever. 12 months from his initial meeting with her until now did not seem quick to me but when listening to the process that other people have gone through I realise how quick it was.

“So I said to him, what happens now” ? “Well she has a diagnosis, you put that down on anything that ever requires her medical history” he said . I replied “What do you not want to see her again? Ever? Even when she is 16?”. “No, that’s it she has her diagnosis” he says.

Now you see where the hysterical laughter comes from. Where was the support group, the network of people that were going to provide us with help and assistance and prop us up. Who was going to help me ensure that my daughter received all the support she ever needed. I know that there are groups you can join but they are not specifically tailored for the individual. Every person with Asperger’s is different they all have different levels and different needs and for every 100 conversations you have 95 can be disregarded as their child will be different to yours. From the other 5 you can take away snippets of information. It’s frustrating, it’s a minefield. I hear reports of special schools that fail kids with Asperger’s, I hear reports of health departments that fail them and my hysterical laughter turns to a desire and a passion to continue to fight and support my child and I will have days where I cannot be the best but I wont give up because at the end of the day you need more than a diagnosis on paper and hysterical laughter.

I recently found this photo on my daughter’s Ipad that she had taken whilst going through the diagnosis process and do you know what she’s right it’s going to be OK.

So what do you really think about me?

For those of you who have started reading my blogs you will be aware that my main focus is on my 13 daughter who has Asperger’s and therefore you may be forgiven for thinking that the title of my latest blog is about how people perceive her, it’s not, it’s about how they perceive me.Last week I was prompted by a series of events that made me sit down and really think about how my daughter’s diagnosis changed me.

The first situation was one where my youngest daughter age 8 was off to sing in a school choir, this meant a 5 hour round journey to go and watch her. Another parent, who has a daughter the same age and who also has a younger son who has autism, age 6, was trying to juggle her world so that she could attend the concert. She had a predicament that meant that the only two other people that her son felt comfortable staying with were not able to get to her house in time for her to make the drive up to the concert. I could sense the guilt that she felt as she told her daughter that she would try her best to get to there. For those parents who do not have an autistic child they would probably ask why she did not take the younger child with her. No way, not an option! 6000 children, plus parents, plus the drive, plus all the sensory issues meant that it was a no go zone. I got it, I understood immediately, so much so that I sent her a message afterwards to remind her not to be so tough on herself. Don’t get me wrong I’m not making myself out to be a super hero or Mrs Perfect, it has been a huge roller coaster in terms of learning for me, and I continue to learn on a daily basis. Since the start of the process of my daughter’s diagnosis my life has became all about autism, reading books about it, reading articles, watching TV Programme’s, going to talks, talking to her teachers etc. I threw myself into it because I was determined not to let her down. It’s trial and error. Now though I find myself in a situation whereby all the trial and error has changed me. So how did this mum perceive me? Does she feel that I am a know it all, someone who is rather cheeky to suggest that she should carry on through the tough times? I hope not. She quickly sent back a lovely message thanking me for my support. I hope that I made her realise that she’s not alone in these daily struggles.

Spontaneity, it’s a word I love, or rather I should say that I have a love- hate relationship with. I love it because I used to be spontaneous, I used to be a bit more free spirited but I have had to adapt. I sometimes feel resentful of the fact that I cannot be as spontaneous as I used to be. For example my daughter’s situation has meant that I could no longer go to the shops on a whim, she needed prior notice. Gosh in the beginning of our journey (I call it our journey because we work really hard together to find a life that works for us both) she needed to know exactly how many items I was buying in the shop and boy did I need help if I had said 10 things and then I picked up 11. I still cannot go on a journey without thinking about if she has had enough food, when she will next need to eat, if the shops on the journey or at the end destination will have the right types of food. The toilet breaks, the length of time in the car, her sleep pattern,the sensory issues the list is endless and so being spontaneous is out the window. However, as time has gone on, we are three years into her official diagnosis, a lot of the above has become normal practice for me, so much so that until I actually sat down and thought about it I was unaware of how much of the above I do on auto pilot. Friendships are hard, they require effort and time and I have struggled with both of these things in recent years because parents of Autism have very little support. This makes me wonder though how do my friends view me? Do they find my planning and organisation all rather frustrating? Are they totally fed up of asking me out to social events because they know that 50% of the time I will cancel? Are they fed up of hearing about Asperger’s? I hope not. I hope that they understand that as much as I possibly can I make time for them, that I love listening to their stories about their day to day lives because although I have changed I need them around me.

The second thing that happened was that my 16 year old daughter asked if my blogs will ever be about her or will it always be about her sister. I get it, it’s tough. Yes, you can read all the Instagram posts in the world that give you a sense of what it is like to be autistic but let’s face it unless you are you just do not get it! That is the hard truth. As family members you find yourself treading on egg shells not wanting to say the wrong thing to offend and yet my 13 year old will say, “well try walking in my shoes sometime”. For my beautiful 16 year old though she has her own daily life issues to deal with, she’s working hard at her A levels and yet I understand where she is coming from because she too has had to change. She has to keep quiet whilst face timing friends and due to our routines she does not have as much freedom as she would like. She probably doesn’t realise it yet but the experiences of her family mean that she is more tolerant and understanding of different types of people, that she can see the view point of others in a way that some of her peers have not yet developed how to do. I do not for one moment think that this is easy for her. I wonder how she views me. Does she feel that I am biased towards her other sister? Does she feel that I do not spend enough time with her? I hope not. I hope that she understands that I love her dearly and that my aim is to make life smoother for all of us as a family.

The third thing that happened was that I went out for coffee with some mum’s from school. Again this was not without a lot of prior planning on my part to ensure that my 13 year old would have someone watching her and that she had plenty of food in that she liked to keep her going until my return a couple of hours later. I really enjoyed being out and being able to talk about general day to day ‘rubbish’. It was fun and it is something that I plan to repeat, they are not close enough to understand my day to day life so I do not feel that they are judging me. I did however find it hard to shut off and found my brain wandering to think about things relating to my daughter, again this is an auto pilot situation. So I wonder did they view me as being a bit stupid? A bit disinterested in the conversation? I hope not, one my mum said it was one of the highlights of her week so I couldn’t have come across too crazy. I hope that they saw the positives in me.

The last thing that happened was that I learnt the very sad news that a lady that I worked with had passed away on the Wednesday and her husband had died the previous the Saturday. She had leukaemia and had refused treatment to extend her life to look after him. I found this very upsetting and it confirmed that for our family that we all make sacrifices and for some those sacrifices are really life changing.