Part 12 – dealing with my son’s agoraphobia

As an autistic person, one of the difficulties my son faces is to predict or imagine what will happen next in any particular situation.  Consequently, he becomes very anxious about going anywhere unfamiliar and prefers to keep to a routine he knows which means he is very resistant about trying anything new.  Changes therefore have to be prepared for in advance and by doing this we can try and make things easier for him though we cannot always avoid him becoming distressed particularly if his senses face a sudden onslaught from noise, heat etc.

So when he started suffering with agoraphobia in 2009 (aged 10) getting him out off the house, even with planning, was initially almost impossible.  (If you click on the agoraphobia link, there is some helpful information and comments that provide a more detailed understanding of what it is like for sufferers of anxiety and agoraphobia.  There are also resources for parents and carers.)

Anyway, returning back to our situation, medication lessened my son’s anxiety sufficiently for us to be able to engage with him which meant that I could verbally dripfeed the idea of us leaving the house and going for a short walk outside.  After mentioning this idea a few times, I then waited till he was as relaxed as possible before I encouraged him out of the front door.  It wasn’t easy.  My son was still anxious about leaving our home but with lots of encouragement (and a little bit of bribery) we managed to get him out of the front door and walk down the road.  We then repeated this walk several times over the course of a few weeks until he felt comfortable enough to extend his walk to the corner shop from where he was allowed to pick some sweets.

In fact we discovered that rewards were really important in helping our son to get out and about.  Every time he succeeded in getting anywhere we rewarded him with either a sweet or one of those mini lego figures which he started to slowly collect! And rewarding him did seem to help for our trips to the corner shop then slowly extended to trips to the local park and from there to walks around our town centre.



There was no doubt about it though, it was very hard work which took time, months and months in fact.  It also took a lot of repeated exposure to the same place in order for him to feel confident enough to extend his trips out to other places.  At times he regressed a bit and couldn’t leave the house and during those times we felt frustrated and thought we would never get him out and about.  This worried us a lot because we were really concerned that we would never get him back into education (more about this in another post!).

You may also be interested to read:-

Part 11 – Look who else helped my son!
Part 10 – Medication – a mother’s perspective
Part 9 – Child & Adolescent Mental Health Services (CAMHS)
Part 8 – The onset of mental health problems

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4 Responses to Part 12 – dealing with my son’s agoraphobia

  1. Aspie in the family says:

    >Hi Karen, nice to meet you and welcome to my blog. It has been interesting to hear how many autistic children have other issues like asthma and allergies – there is some connection going on there I think. I recall my son as a baby having an awful chest infection which I think was a very early symptom. For years, we were regularly in the hospital or doctors getting nebulizers. Now in the last few years, things are more manageable but the problem I find is that my son can, out of the blue, get a serious asthma attack and we're in hospital. Stress is a factor, I've noticed. As for the tiptoeing, son is on them nearly all the time at home, as is my younger daughter and she is now having problems with one of her tendons. PS; I'll try and make the ages clearer when I write about past stories in case it helps others going through the same stage.

  2. Karen V. says:

    >Never thought of agoraphobia as a possible problem here. The way you have handled it is lovely though and making a big impression with the rewards system!! I was wandering around the blog and read some other posts (last was about the asthma missed opportunity) and I could not post the comment there (maybe it was too old of a post?) So here it is:

    I read a few of your posts before landing here. As I read, I was a little confused by how old your son was until I looked to the sidebar there and saw that he is now 12. The feeling I got in reading about the asthma and the school's response is that you may have been angry at one time but you are over it now. Having just read it for the first time, I am angry for you!!

    Tiptoeing is a quite obvious symptom and you know that doctor knew and made a choice not to discuss it with you!! My son does the exact same thing in the same familiar settings – taking the shoes off and tiptoeing but only on occasion – not all the time.

    Our boys are also alike in that my son has asthma. He had pneumonia at age 2.5 and that is when it was diagnosed. And yes, he was throwing up as well and could not even sit up because of the trouble breathing! It was terrifying! Now, he uses a nebulizer 2x per day.

    Very helpful to read your take on all this (did not know the school nurse might not be there every day- I too remember a school nurse always at the school every day when I grew up – and I will be checking that for next year). Glad to connect with you. I'll be back.

  3. Aspie in the family says:

    >Hi MWM – thank for your comment and lovely compliment. I'm not sure that I'm doing a stonking job (love the phrase by the way!); I just do my best for my children, which never feels enough to be honest. I'm sure a lot of mums think the same. I think though that when you have a child who has additional needs or illness we have no choice but to work as hard as we can so that our kids can have some sort of quality of life. Sometimes I feel this is hard to achieve when there are not enough resources to go round.

  4. MWM says:

    >Blimey I am little behind on these posts and need to catch up as I found them very informative and insightful. I stupidly deleted the ones I had started over at SLM in my haste to remove my blog so will probably have to redo them now about Isaac and our journey. Its such hard work and you seem to be doing a stonking job with your little man, he's a very lucky boy!

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