• Replies 6 replies
  • Subscribers 66 subscribers
  • Views 2112 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

why tthey don't understnad "invisible disability"?

wood36

I would greatly aprpciateif if you could kindly give me some advice.

My 11 son has ASD. He still needs help for :

  • un/dressing
  • washing
  • brushing teeth
  • toileting (has not completed toilet training yet, he still need nappies)
  • communication 
  • and he is Statemented
  • and he is awared DLA with high rate of care component and low mobility

My son finds these things are very difficult due to his high level of anxiety and sensory integration problems.

A social worker came and did Carere's Assessment today, as I still have to lift him to un/dress or wash but now I have got hip joint problems and thnigns are very difficult for me to lift him.  What a disappointment it was! She told me my son "looks nornal, therefore, no help is needed from communicty care"

She insisted that he has "healthy" arms and legs and he can do maths in school so that he should be able to do all sort of things by himself and she really insisted that he is perfectly normal and should not be treated as "child with Special Needs", althought he has Statement!!!!! She also told me that one of her cliant's all joints are twisted and on the wheelchair and compare with her, my son is far more than normal.

 I am very frustrated and feels extremly sad, as people, even professioanls, can't understand his invisible difficulties (realted to ASD and mental health issues) think that mys son's difficulties are just becuase  "he is lazy" or due to "my poor parenting hence he is a spoiled kid"   Why they only can understnad and see physical side of disability? why "invisible" disability/difficulty are not equally treated as physical side of problems? It is 21st century but why (majority of ) people think "disabilty" means "on wheelchair" - for example?   

Anyone could possibly give me some comments on this issue? anyone agree with me? I am so frustrated becuase, not only my son's difficulties were acknowledged (ignored) but also his difficulties were viewed as "being lazy". 

  • I’ve read fully through the original post and the comments as a later in life diagnosed Autistic adult and the common thread that I’ve observed, given my own experiences since my diagnosis in 2021 is a refusal to properly understand, based on both deliberate ignorance and prejudice combined with totally unprofessional attitudes and behaviour that rises to the level of professional misconduct, but the involvement and the unqualified opinions of the PCSO is especially concerning - lack of proper education among the general public around hidden disabilities and mental health issues clearly remains an unresolved issue and clearly, this is by deliberate design - I would speak to a legal advice centre or preferably a good barrister (not just a solicitor) as clearly, these attitudes need to be challenged in the courts - having had a lack of post-diagnostic assessment myself, it’s virtually impossible to find nor access appropriate post-diagnostic adult support and it’s both totally unacceptable and inexcusable - it’s really a great pity that we here in the U.K. don’t have the legal concept of class action lawsuits like they have in the US, because legal action is going to be the only way that we are going to get our rights as autistic people, where public and private bodies will have to go through the courts, preferably as high-profile in the media as possible to force public and private bodies to do their jobs properly by highlighting thier shortcomings in a court of law 

  • I think the way you have been treated is very bad indeed and incidents like this are common place it seems. One mum told me recently, that when her SW visited, she wanted to know why her son flapped, rocked and had a meldown on their lounge floor and if she could stop him from doing it!

    The real tradgedy is that incidents like this run the risk of putting off those most in need from even attempting to access support through SS. It has me I can assure you.

    Having jumped through hoops in most cases to get your child even assessed by the NHS professionals, it's a complete insault to then be denied access to support, when the child has already been diagnosed and identified as having needs.

    Sadly, ignorance is not just confined to SW's. I had a PCSO tell me once that their was nothing wrong with my son's! Clearly, she fancied herself as a medical professional as well, because in that one statement she managed to lord her opinion over a fully qualified ED Phych with more than 30 years experience, a Speach & Language professional, OT, Childrens Consaultant and the opinion of SENDIST! I was so aghast, I was stunned into silence.

    She went onto say that day release from Schools to colleges for education in more practical based subjects, was only for the 'Naughty Children' and that those with Disabilities are not the focus of bullying because of their disability! The depths of ignorance out there defies belief at times.

    My son's continue to encounter such prejudice which has gotten worse the older they've become and it's disgracful. One of my boys is so appaulled, he's started up his own campaign to raise awareness.

    You are not alone Hun. Fight your corner for your son. He and you, deserve support.

  • Much that I'm aware of the ignorance that persists about invisible disability I cannot get over the fact that a social worker sent out to do a careworker's assessment was so profoundly ill-informed and ignorant. I think that incident ought to be challenged.

    People sent out to do assessments ought to be adequatrely trained. Clearly this one wasn't fit for the job.

    You have to consider the potential consequences of an error made by such a person. She needs to be reported and preferably removed from post. There's little you can do to train someone that ignorant.

    It is not so much her lack of knowledge of autism as her insensitive use of another of her clients to differentially treat another.

  • Yokshirelasss, Coogybear and Hope, thank you so much for yoru comments and advice, very encouraging!! 

    Yes, many of professionals still do not understand ASD related difficulties, treating like "it is JUST autism".

    When I requested respite care, the social worker told me she wishes she were a single parent and had a disabled child so that she could get respite care and would not have to look after her children for a while. I really could not belive what she said. Respite care is not a reward for being parent with disabled child, it is absolutely essential for carers to maintain their role as a carer. If someone says the same things to a carer who is looking after a child with cancer, nobody would accept/tolerate that. Why she thought it was OK to say to parents with ASD children? just because my son's diagnosis is ASD? It is really worng.     

    I rang NAS help line today. A lady who I spoke to was absolutely brilliant and she has arranged an tel appointment with Community Care staff for me. The appo is in 2 weeks time. I will update my situation. As you all have suggested and encouraged, I will keep fighting until they provide what my son needs. Thank you again for your encouragement. Your commnets have really lift my spirit!

  • The Social Worker does not know what she is talking about, and is untrained, and acted in an unprofessional manner. I am shocked and angered that this sort of medieval mentality still exists amongst 'professionals' of all people.

    I think you should write a written complaint. Please do not let them treat you like this, and assertively fight your corner and dish them the facts.