Whisper it very quietly. A red rose in Yorkshire. The white rose is our counties symbol and our historic rival, Lancashire has a red rose. The two neighbours have had bloody civil wars and conflicts over the crown…. Now thankfully the battles are restricted to the sports field.

Not the only battle being waged here.

Anxiety and adverse reactions to it, are very common for individuals who are on the autistic spectrum. It can take so many forms

  • Social fears and crowds
  • Fear of being alone
  • Noise
  • Thunder
  • Germs and illnesses
  • Eating and food types
  • Animals
  • Heights
  • Darkness
  • Bright lights and colours
  • Types of clothing

Too many to list. Some of these may have sensory origins and appropriate medical help should be sort. Whether that help is available is another matter….

Our son has had to face down and battle a number of these fears. One fear in particular has been ever present. The fear of illness, germs and death. These are genuine, life altering fears and anxieties. Fears which became even more real to him when he lost his mum and both grannies in such a short period of time. We were lucky in that finally his medical notes were passed to a young nurse counsellor. Over the last few years she has done stellar work with him. He trusts her fully – no mean feat. Unfortunately government cutbacks have resulted in far less contact time. Any contact has now temporarily ceased due to the pandemic.

The pandemic has really shaken things up. For our son it has ramped up his fears and anxieties. Now they are off the chart. This manifests itself in so many ways

  • Constant hand and face washing,
  • Frequent hand washing finally taking its toll on the skin,
  • Repeated changes of clothes,
  • Reluctance to leave the house or garden,
  • Refusal to touch many items – telephones, handles, gates, letters, food packaging, surfaces and clothes which have not been washed that very day,
  • Trips to the bathroom every time a bug or fly brushes against him (summer and living next to farm land mean that can be every few minutes),
  • Refusal to venture anywhere near strangers and anyone outside of our household – one of the reasons I can’t arrange for someone to come and repair our boiler,
  • Any food deliveries or parcels having to go into quarantine for at least 4 days before they are let into the house.

So we battle on. Eventually his nurse counsellor will be able to see him but until then it’s self care.

  • We try to maintain a diary. Record and document the anxieties. Try to get a handle on what we are dealing with. Is it improving or getting worse. What improves things and what makes things worse.
  • Trying to balance avoidance with small doses of learning exposure. Yes avoidance works but it doesn’t address the route cause. So carefully controlled small anxiety exposures needs to be factored in. Yesterday that involved both of us putting our hands on the grass for a minute. Then without washing our hands observe if anything bad happens….
  • Trying to slowly control the hand washing. Setting a time limit on the seconds he is allowed to wash his hands for. Currently that’s the time it takes to say a nursery rhyme. Trying to encourage him not to use soap for a number of the hand washes. Get into the habit of properly washing hands when IT IS NECESSARY.
  • Yes he has a range of fears but we can’t deal with them all at the same time. So we only ever deal with one fear at a time.
  • Allow as much access to those things which help him relax. If he wants to go on YouTube, or play an Xbox Game, or watch a movie – then he does….

We all have fears and anxieties. Some disappear, new ones appear and some stay with us for life. With Autism and Aspergers these fears can so easily be ramped up. Yes we hopefully can find ways to eliminate our worries but realistically some fears are with us for life. I guess the secret is trying to provide a range of tools and strategies which we can have at our disposal to help manage those fears when they strike. In that way it still allows us to keep living and enjoying life. That’s the plan with our son.

59 thoughts on “Red rose

  1. I’m sorry that your son has such a battle with anxiety and fear. It sounds like you have some great techniques already in place. I hope and pray that you’ll continue to find more ways to ease his fears, so that you can both find more rest and joy. Take care of yourself as you take care of him. ❤

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  2. The fears of an autistic person can never be compared to the fears of a non-autistic person. It is a big task to make your son feel safe and secure and still lead him to let go of his fears and compulsions step-by-step. You know exactly that one wrong step throws you back at the beginning, at least. You develop a lot of patience that way, I could imagine. Because you need to adjust to his pace. Thank you for sharing this insight. It is so important that people are more sensitive and understanding.

    Liked by 2 people

      1. I don’t understand it at all. Science has developed so much and has so many deeper knowledge about it. I don’t get it why they offer is not going along with that development. The support in our country for any health problem is basically very good. But I don’t know it in detail, to be honest. My son went to school with two boys with autism. Both were so different. But both went to regular school. Most of all one of them really suffered from the mean kids around him. I don’t know about their treatments but one of them went to my sister-in-law who is a children psychologist. I am sure there are programs for this autism in Switzerland but I don’t know how close the institutions are and what they are about.

        Liked by 1 person

      2. Here it’s treated in the sane way as most mental health programmes. The first ones to get cut and the last ones to get access to additional funding. Even teacher training spends so little (if any) time on it. It probably stems from the old days when the approach was to just send kids to special schools. The policy changed to integration in mainstream schools but nothing happened to back it up.

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      3. I think it is a very good thing that they are sent to mainstream schools but it needs educated teachers and also the pubils need to be informed and taught. It would be a great thing to learn and benefit from for themselves since their horizon would be extended.

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  3. It’s hard to even fathom what it must be like for your son but how many children must there be who have these same problems and parents who aren’t able to understand or help. That is not a criticism of them at all, it’s that I think you are the best dad your lad could have. When you tell his story it makes me weepy.

    Liked by 2 people

  4. A few more additions to son’s suggestion box, if I may?
    Have you looked into him seeing the counsellor/nurse over the internet? There is little reason not try it. I would find out before I tell him what you are trying, but if it is a possibility, tell him you were wondering if he might be willing to try that method. Then if he agrees, say you’ll try to find out, and make some calls like you are trying to set something up. And ask him when he would like to “see” her. Or would it be better to give him some previously-arranged options, and let him choose from that.
    Another suggestion I thought about is trying to arrange his fears/needs into classes, so frequent washing of hands can be moved under hygiene, or social-distancing might be joined with fear of being alone. As I said, just things to think about.
    Best of luck.

    Liked by 2 people

    1. Over the internet doesn’t really work for him. He hates the thought of being on camera and taking into a microphone. He also finds it so hard to talk to strangers so would prefer to wait to see the nurse counsellor he really likes.

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  5. It sounds like you have done very well with coping strategies for your son.

    FYI – I live in York county in Pennsylvania. Across the Susquehanna River is Lancaster county. York is known as the white rose city and Lancaster is known as the red rose city and each drops their respective flower on New Year’s Eve.

    Liked by 1 person

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