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?
I think there are several critically significant (and very saddening) reasons why parents of ASD individuals can often be blamed for their child’s difficulties or have to fight very hard for their concerns to be believed and respected by others; and that these ‘critical reasons’ are actually inherently linked to ASD (and UK culture) itself.
High functioning ASD is well known to be hidden; its presentation can therefore be incredibly subtle, and critically it may often first show itself by the absence of appropriate or reciprocal emotional responses from the child. Therefore HF ASD may only first be able to be suspected or detected by those who know the ND individual intimately and who have a genuine emotional relationship (attachment) with them.
Very few everyday ‘professionals’ (teachers for example) have anything beyond a very superficial (and specific, directed, one sided) relationship with the child, and therefore they are simply not able to effectively detect the child’s lack of appropriate reciprocity or emotional responses in (an equal and loving) relationship. When parents then voice their fears about what they may initially believe to be their ‘difficult, puzzling or unsatisfying relationship’ with their child, professional (who may not have experienced these difficulties with the child themselves as they have a different, often superficial, relationship with the child) are then only too quick to dismiss them as a simple ‘parenting skills problem,’ or a psychological issue (in need of counselling) of the parents themselves, or within the whole family unit.
This ASD ‘blindness’ is also pertinent if the child’s social and communication difficulties are manifesting (as they usually always do) in a ‘lack of conformity’ behaviours in school or at home. These difficulties can then be quickly and routinely dismissed by professionals and others (for sometimes unacknowledged fear, Ego driven or power seeking reasons of their own) as being simply ‘bad behaviour.’ Most things that stray from the 'accepted norm' in this way are deemed an automatic threat and treated defensively accordingly. And parents who then voice their concerns about any underlying reason why their child ‘doesn’t seem to conform or understand’ are then too easily open to being defensively dismissed as being bad or ineffectual parents or simply seeking or making excuses for their child’s ‘bad’ (threatening) behaviour.
Another difficulty with detecting high functioning ASD is that ND individuals usually have above average intelligence, and we in the UK are absolutely terrible, as a culture, of pinning great importance on academic or professional excellence while completely neglecting emotional and holistic wellbeing. If a child is making progress academically, sadly some professionals still equate this as fool proof indication of 'normalcy.' For high functioning NDs, where skills may be decidedly imbalanced (and relational skills or personal autonomy cannot easily be detected in highly artificial or controlling environments, such as school) this leaves NDs very vulnerable to having their holistic needs and difficulties dismissed, undetected, and neglected.
Fundamentally, as a highly hierarchal culture, every one of us in the UK is actively groomed from an early age to seek permission and approval from those deemed to be our ‘superiors;’ often to the direct detriment of acknowledging our own needs or trusting our own instincts. This practice makes for more obliging cattle. The flip side of this cultural paradigm is that ‘professionals’ automatically therefore grant themselves authority over ‘lesser others,’ such as parents, in subtle ways which may be hard to detect and which may also be firmly outside of their (the professionals,) own self-awareness. Couple this with our 'natural'(?) tendency to see difference (any difference) as a direct threat, it becomes only too easy to see how ('lowly') parents whose child is different from the majority, in sometimes subtle ways that at first only a loving parent may first detect, can only too easily (automatically even) first be blamed, their concerns repeatedly denied, before battling on until they are finally acknowledged and understood.
Hence why it is so hard to pin these practices down to being straightforwardly unethical or wrong, (even though they arguably are) as they seem to be an accepted part of our cultures 'background noise' from which all other decisions (both conscious and subconscious) are being made. And I personally believe that ‘hidden HF ASD,’ by its very nature, is often a very real and direct victim of our cultures paradigm.
What could enable positive change would be if we were encouraged to trust ourselves as individuals, and be more accepting and trusting of one another as individuals too.
If everyone was really treated and respected as an individual, no diagnosis of ASD (or ADHD) would ever really be necessary.
Fantastic thread! Thank you!
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"
Added: the family court in my experience are the WORST for blame shifting. The girls' mother "doesn't believe in labels" and SD20 was allowed to decide at 14 to live 100% with her mother after a meltdown when she assaulted her Dad, rather than seeking out why a 14 y/o would lose control like that. She was alienated from him for 5 years because of that decision because everyone blame shifted to his parenting style.
It took two court appearances to get an order for SD16 to be assessed even though she wanted it. First reaction was we must have been influencing her because her mother denied any observable problem under her care. Fortunately I did a double take when the mother in her rambling complaint said "and she is clever and would lie to get her diagnosis. The clerk saw my reaction and we believe highlighted it to the judge who must have listened to the recording. He included in his judgement that he doubted a child of 16 could effectively lie for an extended interview and so if the mother thought there was no problems then there was no risk of a false diagnosis.
SO cried at both diagnosis appointments when the results were confirmed. He's fought so hard for his girls to get help and feels his male gender and ADHD was used as excuses for not knowing his girls well enough to be a good parent.
QuirkyFriend There are two aspects hidden in this "blame shifting" behaviour.
QuirkyFriend 1) Misunderstanding the difference between Won't and Can't
QuirkyFriend 2) not understanding how ND behaviour is seldom "bad" but is usually from a place of internal logic.
Absolutely spot on, excellent points QuirkyFriend.