Hello everyone. I just thought i would enquire here about something I have seen discussed a few times. It seems to be quite common for parents of children with asd / adhd to be blamed for their childrens' behaviour. I find this quite worrying and troubling. Does anyone here have experience of this? It seems not uncommon judging by how many times its mentioned on groups that I have joined. It just seems quite sad that some professionals do this. Surely its not right or ethical? How can this be changed?
As a health professional who is ND i do LOTS of education and advocacy to promote inclusion and understanding of ND.
There are two aspects hidden in this "blame shifting" behaviour.
1) Misunderstanding the difference between Won't and Can't...in this case my illustration of this involves the employment of a new graduate with dyslexia. Her reasonable adaption for ward work was simple. A pre printed sticker A6 size for nutritional support patients with some tick box, cross out, and short fields to complete. Around 50% of her work would involve dealing with patients who could be summarised into this and the sticker put in notes addressing difficulty in handwriting, spelling and timeliness. As a senior management team 3/4 of the other dietitians did not want this to be used. I was simply explaining "this is a tool, she's still having to do the work behind it." Then her supervising manager said, "Look if she won't write in notes she should be on capability."
Fortunately our boss called her out and pointed out I can developed this tool to address an issue that as been raised about timeliness and this was nothing about won't but rather about reducing the two hours extra each day she was working to cover her assigned wards.
I was gobsmacked and was determined to get her into a role under my care ASAP. We did and she shone in that role - in primary care we typed results into GP notes or could use stickers in patient held notes.
2) not understanding how ND behaviour is seldom "bad" but is usually from a place of internal logic.
SD20 has a huge irrational needle phobia which manifests in quite childlike behaviour. She had not completed her last scheduled vaccination series as a young teen because the vaccine nurse got angry at her hysterical behaviour.
At 20 there was benefit in completing that course and we as a family do 'flu vaccine because we have several high-risk family members for 'flu. Our GP was great and with my support got the shots done even though SD20 was acting out until after the first one. She was at normal anxiety for the second because of one thing: he's very fast and it minimised the hurt (she's off scale pain hypersensitive and gets tactile defensive unless touch is firm). Between first and second she realised that years of people being afraid of her response meant that the habit was to give shots slowly, when the fast method still hurt but didn't set off the tactile defensive reaction.
Our GP exchanged an email with me later with a thoughtful reflection about my advocacy teaching him about how devastating sensory difficulties can be and he's going to make all his staff aware that they need to ask about touch reactions in ND patients and to note it in alerts as advice for all staff on whether light or firm touch would cause distress
Our GP like so many has almost no experience in ND issues, so my little family with my DCD and comorbid depression and anxiety, my partner with ADHD and cPTSD, SD20 diagnosed ADHD from his referral and SD16 diagnosed ASD from his referral have "more than doubled" his experience of spectrum disorders without comorbid intellectual disabilities. He's appreciated I'm good at explaining what is needed for my little family and consents both girls about disclosure to me about health conditions to help him to help them. I can often add a key piece that explains things like treatment compliance issues.
I'm mulling working with the NAS equivalent in this country to do some education on "what is ASD, how it may present in children, adolescent and adult terms and how health staff in primary care can best respond to the issues it brings in care"
QuirkyFriend said: There are two aspects hidden in this "blame shifting" behaviour.
QuirkyFriend said: 1) Misunderstanding the difference between Won't and Can't
QuirkyFriend said: 2) not understanding how ND behaviour is seldom "bad" but is usually from a place of internal logic.
Absolutely spot on, excellent points QuirkyFriend.