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Strategies for communication & boundaries for an adult parent with autism/ asperger's

Hi, 
I was wondering if anyone could offer any advice.  
My mum told us a couple of weeks ago that she has a high suspicion that my dad has Asperger's with Pathological Demand Avoidance.  She had been at some autism training which was led by a gentleman with Aspergers & recognised a lot of what he was saying with my dad.  She has since met with him, and our local Autism charity and it seems like he fits the criteria for Aspergers's & PDA however when she mentioned the idea to him, he was very angry & rejected the idea.

I have since started reading a book by Tony Atwood and it really is like looking at a book describing my dad.
Relationships in the house, especially with him have been very tense and reaching crisis point.  He has been very stressed & I think this has exacerbated all the challenges with Autism.

I am desperate to get some ideas of strategies that I could use to help improve communication & boundaries with him.  (My ability to communicate has been limited over the last 11 months by energy limitations & cognitive dysfunction & noise sensitivity, so any ways we could make communcation between us less energy demanding or emotional would really help our relationship!) I can find lots for parents to use with children with autism, but struggling to find anything that would be suitable for an adult child to use with her parent who has autism but is denying it.

Particular issues it would really help to get strategies to improve would be:
- deescalating (his) anger in conversations
- encouraging emotional self-care activities: he struggles to take a break when something he wants to do is ongoing and continues to the point he is exhausted or super-stressed.  Simply suggesting he takes breaks to do something that helps him relax or that he enjoys hasn't worked.  He pushes through & then wants to sleep, or escape to a different country.
- being able to put (our) point of view / suggestions across in a way that he won't feel it's a personal attack
- encouraging turn taking in conversations instead of dominence
- increasing ability to read / adapt to others emotions/ body language (even if he's not picking it up but we can state things clearly) e.g. when it's not an appropriate time to have a conversation, or to pause a conversation when its continuing too long (especially when he's become angry)
- encouraging balanced content in conversations (it's always about very deep or emotional topics with no small talk
- ways that I could find out what his triggers are for anxiety or anger (he doesn't appear to be anxious, but mum explained that the anger or wanting to do things his way can be driven by anxiety)

I would really appreciate any suggestions / tips / signposting to good resources.
Is there an online support group/ forum for family members of adults with autism anywhere?  I've only been able to find one in America, or ones aimed at families of children with autism, or people with autism.  I can't get out of the house often so an online forum would be really helpful if one exists.

Thanks,
Snowbelle.




Replies

  • Adrian_ScopeAdrian_Scope Posts: 2,984Administrator Scope community team
    edited September 9
    Hi @Snowbelle and welcome to the community. 
    I'm sure you've already seen these resources, but The National Autistic Society have some advice about how better to communicate. They also have a support forum which you might find useful here.

    MIND also have a guide for practitioners and providers about supporting people with autism here.

    Hopefully some of our members will have some suggestions to add.
    Senior Online Community Officer
    Scope
  • SnowbelleSnowbelle Posts: 28Member Courageous
  • April2018momApril2018mom Posts: 1,660Member Disability Gamechanger
    Welcome @Snowbelle

    Have you tried a communication book? What about using pictures to communicate? Here are some more useful communication tips https://www.autism.org.uk/about/communication/communicating.aspx
    Avoid probing questions. Do not ask too many questions either. Take your cues from him. Other things to try, include communication devices, communication books and signing with your hands. Alternatively, try communication cue cards and conversation starters.
    Engage with him, make sure he can understand. Does he have any hobbies or not? What is his special interest? Use that to communicate with him. Have you ever trialled a AAC communication device with him or not? It is worth trying. http://www.researchautism.net/autism-publications/literature-reviews-autism/alternative-augmentative-communication-and-autism-reviews
  • dolfrogdolfrog Posts: 218Member Pioneering
    Snowbelle 

    First Aspergers is no longer a clincial diagnosis since 2013, have a look at
    "A Concise History of Asperger Syndrome: The Short Reign of a Troublesome Diagnosis" 
    https://www.frontiersin.org/articles/10.3389/fpsyg.2015.02024/full 

    Auditory Processing Disorder as listening disability, can be part of the multiple issues that can combine to be part of autism.

    I have Auditory Processing Disorder, and i can identify with some of the communication issues you have mentioned. Auditory processing Disorder is about the brain having problems processing what the ears hear, including sound based communication such as speech. 
    Thee are 4 main types of Auditory Processing Disorder -  Temporal, Speech in Noise, Amblyaudia, and Spatial - all of which can cause problem with auditory memory, and can cause working memory problems due to stress and anxiety

    Speech in Noise is about having problems processing a target sound when there are low levels of background noise.
    Amblyaudia is about the brain processing better what one ear hears better then how it processes what the other ear hears.
    Spatial APD is about the brain not being able to identify the location of a sound source.

    The Temporal type of Auditory processing Disorder (APD)is about having problems processing the gaps betwen the sounds that the ears hear, which can include the gaps between words in rapid speech. It id also the main underlying cause of dyslexia.Those of us who have this type of APD can have problems following conversations, and following multiple verbal instructions. And the stresses this can cause can lead to high levels of anxiety especially if we feel that others do not understand how we need to communicate. which can lead to anger and  deep frustration. We develop our various alternative compensating skills and abilities to work around our personal limitations which means that we can only do things our way using the skills and abilities we have developed, which is usually not how others perform various tasks. .
    Running the alternative compensating skills and abilities we require on a daily basis (coping strategies) can overload the limited capacity of human working memory, which is much like the RAM of a computer if you overload it it crashes, Running coping strategies to work around our limitations can take up most of our working memory, which others use to perform their daily tasks, which means that we may have problems remembering to do things on a daily baisis, which is why my wife is may carer and has to give me my daily medication, ift was left to me i would may be only take them once or twice a month if i remembered. 
    We can also have word recall problems finding the right word when we want  ot explain things, so we find and use alternative and sometimes long winded ways of explaining things. 
    The frustration of not being understood by others can lead to long verbla output first to explain the issues as we understand them, before we forget some of the information, and to avoid interruptions from others which may lead us to looseing the thread of what we are trying to say. (I have had similar issues with the incompetent medical professionals who have no idea as to what my communication disability is.. If only they would start by saying I understand your APD disability)

    Your Dad may have other issues. as well

    I hope this helps
  • SparkleSheffieldAutismAdvisorsSparkleSheffieldAutismAdvisors Posts: 29Volunteer community advisor Courageous
    Hi @Snowbelle

    It sounds like you are very active in wanting to help your Dad which is lovely to hear that he has support, even if he doesnt recognise the importance right now! It's important to remember that your Dad had lived his whole life how he is, with his own personality and coping mechanisms (again even if he doesnt realise what he's been doing!). Therefore he may be reluctant to change and it may take longer than you anticipate for any strategies to be started. Which is no reflection on your willingness to help at all! But more just that it's been his way of life for such a long time. 

    The above advice is all very useful for you to take on board, there does appear to be less online support groups for families of adults, but keep searching and you'll find some that are suitable for you. 

    Any other questons, feel free to ask us.

    The Sparkle Sheffield Team  :)
  • AilsAils Posts: 567Community champion Pioneering
    Hi @Snowbelle and welcome to the Community.  It is nice to meet you and thank you for sharing with us.  I'm sorry to hear about your family struggles and can appreciate what your father is going through must be quite upsetting for you all at times.  I have a friend whose partner has Aspergers and she finds the following forum helpful for support:-

    https://different-together.co.uk/

    I know the above is for partners really, but you may find some helpful info/support on the site if you want to have a look.

    Please keep in touch and let us know how you are getting on.  The Community is here to support you also.  If there is anything else we can help/support you with then please just ask.  All the best.  :smile:
  • kath1kath1 Posts: 5Member Listener
    Hi @Snowbelle
    Hope u don't mind me asking how olds your dad my husband has autism he is sixty  he was diagnosed in his late forties he started doing the brain gym many years ago and it really helped if you go online you may get some exercise your dad could do but you may find it difficult for him to do them he need do the exercise daily my husband used to have a book that he followed if you need me to give u details get in touch hope this helps I know how hard it must be for you and your mum but with the brain gym it really helped my husband let me know if you need any more help 
    Kathryn 
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