Autism and Aspergers
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I struggle with when my autistic son runs off

shezzieshezzie Member Posts: 2
edited October 2016 in Autism and Aspergers
Hi mine sheena my little boy been diagnosed with autism he a lovely little lad well in say little he's as tall has me na
I struggle with wen he's on one he runs off which is scarred me if he runs into road I don't want image what wud happen xx 

Replies

  • shezzieshezzie Member Posts: 2
    Need some help r suggest how to cope with him 
  • Blue FrogBlue Frog Member Posts: 373 Pioneering
    Hi @shezzie I don't know a lot about autism, but hopefully someone will be along soon who does.

    Have you thought about asking for a wheelchair or special buggy? Some people with autism like these and feel safe - Wheelchair services do provide them if the child is at risk of getting into danger

    Some people use harnesses and reins - but I don't know much about these. You can get badges/wrist bands people with autism can wear - so if they get lost, someone will understand why they don't speak 

    Are you getting the right level of DLA? If he is running away and very hard to look after while out, he might be able to get the mobility payment and maybe a blue badge 
  • [Deleted User][Deleted User] Posts: 689 Listener
    The user and all related content has been deleted.
  • Yiman60Yiman60 Member Posts: 95 Connected
    shezzie said:
    Hi mine sheena my little boy been diagnosed with autism he a lovely little lad well in say little he's as tall has me na
    I struggle with wen he's on one he runs off which is scarred me if he runs into road I don't want image what wud happen xx 
    Hi,
    One of the issues in Autism Spectrum is the lack of danger issues. Unfortunately it's going to be a struggle but I suggest when he is with you he either has reins on if he is young or you keep him on the inside of the pavement, you walk on the outside, that way if he tries to escape you are quick enough to respond. Some autistic children refuse to hold hands so I know how difficult it can be. You could try a reward scheme, if he has been good reward him with a treat of some kind.Even if it's smilie face stickers.
    Have you a support team that will help you? Have you had an assesment of your needs by the local Carers branch where you live ?
    If he is at school in England this group will help you with what you are entitled to.
    https://www.ipsea.org.uk/
    In Scotland it's Enquire.
    Ask around and see if there are any additional support groups you can attend. You learn more from parents than any book .
    Hope this helps xx
  • AlexAlex Scope Team Posts: 1,325 Scope community team
    Hi @shezzie,

    How are things going with your son?
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    @VioletFenn do you have any experience of this? 
    Scope
    Senior online community officer
  • VioletFennVioletFenn Member Posts: 124 Pioneering
    Hi, thanks for tagging me in this. Yes, my son used to do exactly this! I can't actually suggest much more than @Yiman60 already has - the lack of self preservation is a common issue with ASD and it's really difficult to work around. I avoided potentially difficult situations as much as possible - we would travel in the car when at all possible, rather than walking. The comment about always being on the outside of them is a good one - it gives you a tiny bit more time to react - as is making sure they have ID and/or a contact number on them at all times. 

    I can totally recommend IPSEA - they helped me no end. I also applied for (and got) DLA for my son which helps with extra travel costs etc. Also check out your local autism support groups (it's Autism West Midlands in my area but all regions have them) - they are often the best bet for direct support as they will come to see you in your home or arrange an appointment for you at their office in order to talk through any issues.


  • Yiman60Yiman60 Member Posts: 95 Connected
    http://www.parliament.scot/GettingInvolved/Petitions/PE01625

    My two boys have PDA  as well as Asbergers. The anxiety is off the scale. I cannot get a formal diagnosis because in the Scottish Borders it is not recognised. It's very much a Post Code Lottery. We are Petitioning the Scottish Parliament to raise awareness and get PDA formally accepted. This would set the precedent for the rest of the UK. It needs masses extra support and PDA Stratagies as the demand avoidance is extreme. Any one in the World can sign and comment.

    It's getting the right balance . Working out for older children what works , what they can cope with. School buses are not the easiest to deal with at the best of times.

    For younger children it's being one star ahead all the time. You want them to learn but are worried in a situation like this. 

    PIP is a very sore subject in our house, it's so erratic and stressful to apply for .

    The entire system needs an overhaul. It's so unfair for folks on the Spectrum.

    So grateful for Forums like these. It proves you are not alone and someone really cares and understands . Makes a huge difference.


  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    It's brilliant to hear that the community is a support to you @Yiman60  
    Scope
    Senior online community officer
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    @Acranea do you have any experience of this? 
    Scope
    Senior online community officer
  • Yiman60Yiman60 Member Posts: 95 Connected
    edited December 2016
    Sam_Scope said:
    It's brilliant to hear that the community is a support to you @Yiman60  
    It's absoulty heartbreaking to see lives destroyed that could have been prevented. Mental Health Services have been the Cinderella of the NHS for far too long. Autism Spectrum needs to be removed completely and given its own service. It's a very complex Syndrome and I am still finding additional syndromes 2 years later.
    That a mum with no qualifications can work out six issues between her boys that all other medical staff failed to recognise is terrifying. Add on the wrong type of Epilepsy, being left in a seizure for 29 minutes because a Consultant told ambulance crews he was attention seeking. No one would help when my son had a meltdown and trashed my house. Response from local children's ward, " we don't want him if he acts like that here we will phone the police and throw him out" .

    The only people who would help me were the Police and the ambulance crews. Mental Health didn't want to know. Go and see your GP , CAMHS will see you in three months. I wish people would stand up for these children and families. CAMHS is an absolute joke, it's causing mental health issues not helping them. 
    Totally and utterly abandoned by all but my GP. I wanted to end my life, without him I would have.
    That's how the Petition evolved. No one would take responsibility I was passed from pillar to post. Another mum and I have been through hell. We now have SEVEN cases recognised but the education system says PDA does not exist , going by clueless CAMHS , this causes severe mental distress because the staratigies are different. That's mental cruelty it's about time it was exposed. Where areas have accepted it and used PDA Stratagies the outcome can be so different. There is no money to fund so many children in Specialist schools so it's easier they fall out the system.
    Childrens Human Rights don't exist. 
    Its about time the harrowing stories were exposed. The majority of Charities don't speak out about the truth because they are Government funded. 
    Harrowing , horrendous, and absolute hell is what my children and myself have gone through.
  • Yiman60Yiman60 Member Posts: 95 Connected
    edited December 2016
    I am at present battling to get a Blue Badge for my youngest son and have been turned down three times recently because his PIP is totally inaccurate. What they want me to do is to go through PIP again, which would be so stressful for him , then reapply. 
    My son has Asbergers, ADD , PDA, not recognised, Asthma and I now know Marfen Syndrome, again missed by three Consultants. They don't understand the issues.
    Its very much in the balance due to the extreme anxiety if he will be able to continue this College  course. We keep tweaking as we go along but he is the first student with PDA. The normal outcome is the same as my eldest , a life on benefits because there was no early intervention.
    I am asked to cause him severe mental distress because the paperwork is wrong. In the mean time that amazing young man shows extreme bravery . It would make a huge difference reducing anxiety . He is not suppose to carry heavy objects and gets tired very easily. Partly picky eating and now we know Marfen Syndrome.

    I would love someone from Scope to help me explain  Severe Anxiety off the scale to these staff.

    Like all mums I get absolutely fed up fighting and been turned back or given the wrong grade. We have enough to do  .
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    @julia35 I believe your son was also diagnosed with PDA, do you have any information that could support @Yiman60 ?

    Yiman, I am sorry you are having such a tough time, you sound really frustrated.  It sounds like a very difficult time for you.  Have you seen the PDA Society?

    PDA was also discussed on BBC radio 4 recently, you can listen again here. 
    Scope
    Senior online community officer
  • Yiman60Yiman60 Member Posts: 95 Connected
    edited December 2016
    Sam_Scope said:
    @julia35 I believe your son was also diagnosed with PDA, do you have any information that could support @Yiman60 ?

    Yiman, I am sorry you are having such a tough time, you sound really frustrated.  It sounds like a very difficult time for you.  Have you seen the PDA Society?

    PDA was also discussed on BBC radio 4 recently, you can listen again here. 
    Yes. The PDA Society is supporting our Petition.
    Basically I am on my own , in poor Heath , with no support whatsoever. Social Services abandoned us , because the eldest could not engage with Autism Iniative. 
    The people who have seen the evidence have commented on my case is the worst case these have seen in their careers.
    Just have to muddle through the best I can.
    What will be exposed if horrific. It includes corruption, blatent lies and cover ups.It also includes Mental Cruelty. Some cases include Physical Cruelty.
    All people were interested in was saving their careers and covering up Laws being broken. All I wanted to do was to sit around a table and discuss the mistakes we had made to prevent this happening again.
    What it will expose is a scandal that puts all others into insignificance.

    I am still on my own, abandoned. Carers , Contact a Family  LEAD Scotland and so many more are now supporting the Petition. Phil Christie the Worlds Leading Expert has signed. He worked with Professor Elizabeth Newson  Nottingham

    All I have ever had is a response like yours , " Have you tried" .

    All because they wanted to cover up the truth.

    We need PDA formally recognised. They must listen to the Parents.

    Too many lives being destroyed and it's been swept under the carpet.

    For the moment we must must put aside who is to blame. We all are. We must get Politicians to work together , listen to the facts , and get PDA recognised.

    If you want to really help sign the Petition, spread awareness through Social Media , stop the appaling outcome of so many, care homes, prision, life on benefits.

    This is a window of opportunity not to be missed. We need quality submissions. Children , teenagers and adults must be helped and supported.

    Two mums have started this Petition. Will you stand up help us and end this appaling situation?

    It took a visionary Professor to recognise the Condition in the 1980s and in my opinion we are up against ignorance and arrogance . There is so little good practise out there.

    Please be courageous and help us get PDA recognised.

    http://www.dailyrecord.co.uk/news/scottish-news/scots-child-handcuffed-school-three-7278998

    https://www.pressandjournal.co.uk/fp/news/inverness/1078686/seven-year-old-autistic-daniel-was-handcuffed-by-police-after-trashing-his-bedroom-during-a-meltdown/

    https://www.facebook.com/groups/1129228007099112/

    http://www.parliament.scot/GettingInvolved/Petitions/PE01625


    It is essential that PDA is recognised to ensure that children, teenagers and adults with the condition get the support and understanding that they need. Without this support the mental health of individuals with PDA is at severe risk. PDA also has significant impact on families and is causing family break down and crisis. It is essential that the condition is not only recognised but that a wiser understanding of the condition is spread throughout educational and care settings too. 

    Laura Kerbey BSC(Hons) PGCE PGCSE NPQH

    18:33 on 29 Nov 2016


    Just one of the comments.


    Would Scope support our Petition? Will you listen to World Experts ? Will you listen to parents and  adults desperate for answers, help and support?

    We all know prevention is better than cure. The state of mental help services is shocking. There is no available Children's mental health beds past Dundee. They now have a Mental Heath Minister but no real funding. It's just talk , talk, talk.

    Waiting times are appaling . What are you suppose to do in the mean time. The Police are now the Emergency Mental Health Service.

    Governments blame Council,, Councils blame Governments.

    The situation is deteriorating by the day by cut backs.


    https://www.change.org/p/scottish-government-give-children-with-disabilities-the-support-they-need-in-school?tk=Z_LhwZ4ysjp_Cxm_lJ7rMNnMqpNg1w8v7fAh5Llu2wU&utm_source=petition_update&utm_medium=email


    Exactly the same answer as I received from the SNP Government . Does not listen to thousands of parents, teachers, even CAMHS complaining about the increase in children with mental health issues because of cut backs to support in schools. One teacher has 9 additional support children including a blind child, went home and cried because he could not support the children in his class.


    Exactly the same answer as I received. Go to Enquire or Govan Law Centre. Fob these families off . Don't face the shocking truth and reality of the situation.











     





  • AliceSAliceS Member Posts: 22 Courageous
    Hello. My son has autism along with a few other things but doesn't run off from me. What he does do is have massive melt downs and yesterday (among other times) he lay on his bedroom floor and refused to move even though we had to go and collect his sister from the school bus. I find distracting him works well, asking questions about something he loves to talk about. Can you tell when he's going to run? If you can work out triggers then bring in the distraction techniques when you sense it coming. I write a blog about life with my son and some of what I've written may help you - please have a look and see if anything resonates www.livingwithajude.co.uk or find Living with a Jude on Facebook. I engage a lot with other parents of SEND and ASD children so it may help to get some hints. Alice 
  • julia340julia340 Member Posts: 1
    evening all as you may be aware my son is diagnosed with ASD Aspergers and PDA looking at earlier post about son runing off i also had this with my son before trip we have decided that we say a stop what we are doin word ours was cupcake if i or my son said cupcake this didnt attract attention with usual screamin throwing ourselves on floor or worse running away we make plan before we go out as i myself dont have support also and its difficult i try to move as many battles as possible to avoid as much PDA  meltdowns as mums of these kids its nice to share experiences and help each other there is lot of mums on PDA facebook page your not alone theres other people with same fears as we understand each other 
  • Yiman60Yiman60 Member Posts: 95 Connected
    edited December 2016
    julia340 said:
    evening all as you may be aware my son is diagnosed with ASD Aspergers and PDA looking at earlier post about son runing off i also had this with my son before trip we have decided that we say a stop what we are doin word ours was cupcake if i or my son said cupcake this didnt attract attention with usual screamin throwing ourselves on floor or worse running away we make plan before we go out as i myself dont have support also and its difficult i try to move as many battles as possible to avoid as much PDA  meltdowns as mums of these kids its nice to share experiences and help each other there is lot of mums on PDA facebook page your not alone theres other people with same fears as we understand each other 
    Thank you.
    Mary and I are praying that Politicians listen to us , we have had amazing support from World Experts and more to come .

    The Policies and Stratagies we have don't work. CAMHS were clueless. I was told for EIGHT years my eldest had PTSD.

    How it affected my children was different. One like yours he detested holding hands and  you had to watch him like a hawk. It is really frightening with extreme demand avoidance and the lack of prediction, mine have both Asbergers and PDA , road safety can be a nightmare.

    Hope you will consider signing the Petition. Anyone in the World can sign . It then sets the precedent for the rest of the UK then the World.

    We need parents to explain to Politicians without formal recognition how difficult it is to gain any sort of support.

    We have been told even if you get a diagnosis out of area we won't accept the diagnosis it does not exist.

    I want to know would anyone diagnose an adult ? It's very much a Post Code Lottery on where you live.

    The entire Autism assesment needs scrapping . It fails to recognise so many children.  Every teacher needs training not just new starters.

    We are certainly going to give it 100% for effort.




  • fisheralison2006fisheralison2006 Member Posts: 6 Listener
    hello, I'm new here and I'm trying to raise awareness of PDA which is a sub profile sitting alongside ASD.  

    Pathological Demand Avoidance (PDA) is now widely recognised as a distinct profile of autism. Individuals with a PDA profile will share similar difficulties to others on the autism spectrum in the following areas:

    • Social Communication Difficulties
    • ​Social Interaction Difficulties
    • Restrictive and Repetitive patterns of behaviour (including sensory seeking or sensory avoiding behaviour)
    More information can be found https://www.pdasociety.org.uk/what-is-PDA/about-pda

    we are currently campaigning for more awareness - please take 2 seconds to sign our petition to ensure children and adults with asd PDA receive the correct support it is key to their success in life.

    https://petition.parliament.uk/petitions/202680
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