The Challenges People With Selective Mutism Face When Trying To Receive Treatment

TRIGGER WARNING: This blog contains content that may be upsetting to some people. 

 

The hardest ongoing battle that I have had with my Selective Mutism has been trying to receive the correct treatment. From the start, I have dealt with professionals having absolutely no clue what Selective Mutism really is and how to treat it; professionals that are supposed to be trained in treating mental health conditions. I am confident that I won’t be the only person with Selective Mutism that has ever received the wrong treatment; I received treatment for shyness as a child rather than anxiety.

The problem is not that professionals don’t have a clue how to do their job; a lot of them are good at what they do. The problem is that for whatever reason, Selective Mutism does not seem to be a compulsory topic to cover whilst they are doing their training. There have been far too many cases where I’ve heard from others with SM or even experienced this myself that professionals have said that they have either never heard of Selective Mutism, or that during their training they were told that they would never come across Selective Mutism and so it was either only briefly looked over, or never looked over at all. This is unacceptable and the fact that they are being told that they will never come across Selective Mutism is complete nonsense. Selective Mutism was thought to be rare, however research has shown that Selective Mutism actually affects about 7 in 1000 children or 1 in 150 children; there are currently no statistics for the amount of teenagers and adults that live with Selective Mutism, so who knows how many people are out there? Even if Selective Mutism was rare, by having the attitude that professionals will never come across it means that they are showing absolutely no remorse towards those who do suffer with Selective Mutism as it means that the few that professionals would come across would not be able to receive the correct treatment due to having no knowledge about how to treat it.

The fact that very few professionals know how to treat Selective Mutism means that it has had an enormous negative impact on mine and many other’s lives. I received my diagnosis at the age of 5, which means, had professionals known how to treat SM, I could have overcome my SM very soon after. Instead, I was left without treatment to the point that my SM became so severe that I was completely unable to function in day to day life. I developed Agoraphobia at the age of just 15 as a result of my Selective Mutism and anxiety being left without treatment to get worse. I was unable to leave the house, go to school or live a normal teenage life. I should have been outside all day every day bursting with energy and living a normal teenage life. Instead, I was stuck inside my house for a huge chunk of my teenage years.

Selective Mutism is not something that most people just grow out of. When I was discharged from CAMHS at the age of 7 after receiving treatment for shyness, my parents were told that I would just eventually grow out of it. I never did grow out of it. I spent my entire life after that believing that one day maybe I would just grow out of it. I would get up every day hoping that that day would be the day where I would finally just suddenly be able to talk; that day never came. Selective Mutism is not generally something that improves overtime. In most cases, without treatment, Selective Mutism tends to get progressively worse as time goes on. On top of this, due to the levels of anxiety increasing as the SM gets worse, it can actually lead to developing other anxiety disorders as well as other mental health conditions. I currently have around seven (that I know of at least) different anxiety disorders as a result of my Selective Mutism being left without any treatment.

Having a voice is one of the most important parts of life. It provides you with an identity and allows you to express yourself for who you really are; people with Selective Mutism are unable to do this. Instead their personalities are hidden away from the world and they are unable to live up to their true potential. Those who have Selective Mutism tend to have higher than average intelligence, they have so much to give to the world, yet their Selective Mutism holds them back. Their inability to communicate literally affects every aspect of the person’s life. Being unable to speak/communicate has the potential to devastatingly put someone with Selective Mutism in grave danger if they do end up in a dangerous situation and can’t scream out for help. The fact that there have been reports of people with SM who have broken limbs and haven’t been able to cry out for help, speaks volumes. People with Selective Mutism experience such severe anxiety that they physically cannot cry out for help even when they’re in a really dangerous situation.

Although I was one of the luckier ones who did find a professional who knew how to treat my SM, it wasn’t until I was 16 that my treatment began. This meant that my Selective Mutism had been left untreated for 14 and a half years at that point. By the time I began treatment, as I mentioned earlier, I had already developed multiple other different anxiety disorders. However, since being discharged from CAMHS at 18, I have yet to find a professional who is able to provide me with continued treatment.

I’ve so far had no luck with receiving treatment for my Selective Mutism with adult services. I have worked with 2 different psychologists in adult services and neither had ever had any training in Selective Mutism. Everything that they learned about Selective Mutism was either through research they did in their own time after having me as their client, or through having to educate them myself on the matter. What I do appreciate, is when professionals will admit that they haven’t ever received any training in treating Selective Mutism as a lot will not admit it. I would rather if a professional was to tell me that they hadn’t a clue rather than pretending that they did as at least then I would be prepared when they aren’t able to treat my SM.

Another problem is the cutbacks. Even if you are to find a professional that knows how to treat SM, the issue is that with the 10-12 session limit, or even 6-8 in some areas, is that this simply isn’t enough time to treat Selective Mutism. Selective Mutism is something that requires long term treatment and this can sometimes take years of continued treatment. I was with CAMHS for over 2 years before I was discharged and I still hadn’t completely overcome SM by the time I left. People with SM are being given 6-12 sessions, depending on the limit in their area and are then having to go back onto the waiting list before being given another 6-12 sessions. This cycle continues over and over again. The issue with this is that without continued treatment, regression happens. During the time they spend being back on the waiting list, they can often regress so much that when they begin treatment again, they are back where they started to begin with. Not only that, it can take that many sessions for someone with Selective Mutism to finally feel comfortable so that they can trust the therapist enough to open up to them. Too many times, they are often given a different therapist when they are given more sessions and this process has to start all over again. Many people are unable to work due to their SM, and without a job, going private just isn’t an option for them. At around £200 a session, it is also not an option for even those who are able to work.

Some areas do offer long term support, but often the waiting list for this is 2-3 years. That is a completely unacceptable length of time to have to wait when you suffer from Selective Mutism. Since Selective Mutism does get progressively worse the longer time goes on, 2-3 years is a tremendously long time for someone to wait to get treatment. Imagine living your life without a voice and being told that you had to wait 2-3 years before you were going to be given any kind of help to help change that!

Another issue is because doctors and professionals are not always trained in SM, is the issue that comes back to the name. It can be hard to get them to take Selective Mutism seriously and admit that it even exists if they’ve gone through all that medical training and never once come across it; especially since it has the word selective in it. It can be a battle to get them to agree to give someone with Selective Mutism any treatment in the first place. Disgustingly, many people have to bring a printout from the NHS website to their appointments as proof that Selective Mutism actually exists. Without this, many doctors actually refuse to believe that it is a real thing.

Many people with SM are subjected to some very shocking comments by a lot of doctors. I have personal experience with this as I once had a doctor who asked me if I had been self-harming; when I said no they basically said that because I wasn’t hurting myself, they didn’t understand what my problem was. I also had a comment from a doctor who said there were others that were worse off than me because they couldn’t leave the house at all; going to that appointment was the first time I had left the house for that entire week. It is not a competition to see who’s the worst off, everyone’s struggles count; they do not need to be invalidated just because someone else’s struggles are worse than theirs. It is completely unbelievable what some doctors can come out with, but this is the reality for those living with Selective Mutism. When it comes to raising awareness for Selective Mutism, I want to keep absolutely everything I say real. I do not see the point in sugar coating anything because it will not create a picture of what the reality of living with Selective Mutism is really like.

What professionals often don’t know is that they do have knowledge in some of the techniques that can be used to help people to overcome SM. I was given something called Desensitisation – a technique that is often used to treat phobias that works at gradually exposing someone to the phobia until they no longer fear it. Most professionals do know how to treat phobias, and if they can treat phobias then there is a lot they can do to help those with Selective Mutism without even knowing it. Of course there are other things that would need to be done alongside this, especially if they have also developed other anxiety disorders but the fact is they already know more than they think about treating SM.

The last time I was discharged from the adult mental health services, I was told that I just wasn’t ready to start receiving therapy for my anxiety disorders. I was told that since my communication is quite limited during therapy sessions due to my anxiety that once I improved with my communication then they could start to help me with my other anxiety disorders. If they knew how to treat Selective Mutism then none of this would’ve ever been an issue. They could’ve treated the remainder of my Selective Mutism and then gone onto my other anxiety disorders when I was able to communicate a bit more. The issue is not that I am not ready to receive treatment for my anxiety disorders, the issue is that without treating my Selective Mutism first, it is going to be incredibly difficult to try and treat the other anxiety disorders.

As a result of professionals not knowing how to treat SM, a lot of people are often given medication. However, medication does not fix the problem; it only tends to take the edge off things. Therapy must be used alongside medication for someone to completely overcome SM. However, some people, like me prefer not to use medication. I feel that it is unfair that due to the lack of treatment, I may eventually have to resort to using medication which is not an idea I have ever been comfortable with. Medication should be a personal choice, not something that people with SM feel they have use because they feel there is no other option.

I am hoping that if we all work together to spread awareness, Selective Mutism will continue to begin to be taken more seriously and that someday in the near future, Selective Mutism will begin to become a compulsory topic during doctors’ and professionals’ training. There are far too many cases of people just like me, whose SM began in childhood and was left untreated until they were teenagers, or even into adulthood. For others, their SM continues on into adulthood and they may never receive any treatment. None of this should ever be happening. Selective Mutism needs to be nipped in the bud and dealt with as soon as it begins. Communication is a fundamental human right and we should not have to fight for our voices to literally be heard.

But we sure as hell will if that’s what it takes!

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7 thoughts on “The Challenges People With Selective Mutism Face When Trying To Receive Treatment

  1. Thanks for this Leanne, all the time I hear that she’ll grow out of it, by sharing your blogs I’m hoping some of my friends read this to try and get a better understanding of SM, your doing a fab job by the way, Dawn xx

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    • You’re welcome. 🙂 Yes, NEVER listen to anyone who says that she’ll grow out of it. I’m hoping my blogs will help people to understand that just hoping that someone with SM will just grow out of it never works, it just gets worse overtime. Thank you so much, I appreciate all the lovely comments you have been giving me, really means so much to me! 🙂 xxx

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  2. Hello Leanne 🙂 I would like to be able to share your excellent insight into SM with our French-speaking community. Will you give us permission to translate your posts, please? Thanks a lot in advance! We advocate the same methods, except we do our best to help children when they are very young (nursery or primary school). So your testimonials give hope to the older children, often trapped in years of silence since never receiving proper attention or treatment before in their lives… Thanks 🙂 Valérie Marschall, présidente d’Ouvrir La Voix – Charity organisation based in France – http://www.ouvrirlavoix.sitego.fr

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    • Yes feel free! 🙂 Share as much as you like and translate as much as you like, that’s what they’re for – to spread awareness! 🙂 That makes me SO happy to hear that you try your best to help children when they are young, I wish that was done everywhere in the world as it is so important to help people when their SM first begins. Oh I love knowing that they’re helping to give people hope! Not only am I doing these blogs to get the awareness out there, but also to help others who are going through the same things so makes me feel SO proud that they are helping to give hope to others. 🙂

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  3. Every time i read stuff like this is really frustrates me. Ugh! How ignorant can “normal ” pple be. Sometimes i dont know if im even human. We should fight for our rights but maybe some aren’t because of their high functioning SM. So the ones that should be getting help the most is pple w/ SM i believe. But instead alcoholics are getting helped just because they can talk. What an ugly society these pple live in. Not to mention overpopulation. Give me a break! I never got diagnosed w/ SM (i know i had it im sure) but i received counseling since childhood.
    Idk if i wanna continue reading this since it makes me hate everyone for being thickheads but maybe ill make someone else read it.
    You are doing amazingly in raising awareness. Thank you! ❤

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    • I agree with so much of what you say! It’s so sad that we live in a world where things like SM aren’t taken seriously enough which then ends up having an enormous negative impact on people’s lives. I really hope that we can all work together to help change the world so that things like this never happen. Thank you so much! 🙂

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  4. Hi there – thank you so much for this amazing blog. I’ve been a classroom teacher for many years, but last term was introduced to a 7 year old girl in our class who has selective mutism, the first time I had heard of the condition. So far our main strategy for helping her is trying to reduce her anxiety, having fun with her, getting her to work along side a friend she is comfortable whispering to, and not making a big deal out of anything we do see her ‘saying’ (mouthing). Would you have any specific tips for us teachers to use in a busy classroom (58 children in a shared space) that might help her take a step towards her journey of recovery? (It’s hardly therapy, but we’ve got to start somewhere…)
    Thank you so much. Katherine

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