Many speak of the difficulties autism spectrum co-editions and their associated co-morbid’s have in the daily life of children, adults and their families. This article is written with the motivation to raise awareness with the hope of inclusion to minimise the common issues such as isolation, mate crime, hate crime, discrimination, domestic abuse, mental health issues, unemployment and reduced life expectancy.
However, there is a darker shadow that can overwhelm families, where not only the child, but the parent(s) has an autism diagnosis. Here in lie the challenges that to many appear so unbelievable that their minds turn from what is too uncomfortable to bare.
Today I share these challenges with you in the hope that the children of today will be spared the pain so many parents face as adults.
First of all, it is important to note the fundamental issue underlining the many obstacles and challenges that face these parents.
In reality the core issue is that the NHS, Educational and local authorities do not have sufficient funds to provide provision, which can and does lead to bad practice. It is in some respects, it’s easier to focus on parental diagnosis and use it to justify negating responsibility to the children.
It is no coincidence that evidence that Chancer’s list used in safeguarding training to all professional sectors is to red flag parents when they are seeking support for genetically predisposed conditions and their associated co-morbid’s.
The list includes ASD, Hypermobility Ehlers-Danlos Spectrum (hEDS), ME, food intolerances, amongst others. Additionally, it is no coincidence that foundational markers associated with spectrum conditions are not commissioned, such as Sensory Processing Disorder.
Furthermore, diagnostic tools known to be more effective are not used, nor are diagnostic pathways created; instead barriers to accessing services which would have the potential to pick up spectrum disorders at an earlier age are currently in force.
The reality is that with an autism diagnosis, these professional sectors will incur costs which they do not have the monetary funds to support.
Neither is it a coincidence that since the implementation of the Education Health and Care Plan, there has been an increase in illegal Section 47 and Fabricated or Induced Illness (FII) accusations.
These illegal accusations have been levied at parents who have sought support for their children when they do not quietly accept breaches in SEND and family law.
Moreover, as a consequence, there is and will continue to be misapplication of policies and codes of practice where children’s needs are minimised or disputed, where they are refused assessments, interventions and the focus is then predominantly on the parents own ASC diagnosis.
As seen from Chancer’s tick list, when a parent with an ASC diagnosis approaches the appropriate services within the NHS, there begins the tightrope walk which has traps below them ready to break their families apart. This is too difficult for many to comprehend. What are these obstacles? How are there potential traps awaiting a parent with an ASC or hEDS diagnosis?
Firstly, the parent blaming begins when our diagnosis is used to justify the refusal to assess as professionals write and verbalise “because of mum’s autism,” “because of learnt behaviours” or “attachment issues”. Instead of focusing on the child’s needs.
Professionals will draw upon their textbook knowledge base, consequently, they will dismiss the child’s individuality, genetic predisposition, life experiences and most importantly will forget that the child is an individual’s not a text book example.
It is also well documented that those within the autism community are vulnerable to being drawn into domestic violence relationships, having associated depression, anxiety, self-harm, eating disorders and masking. All of these carry with them an increased risk of suicidal ideation and suicide attempts.
Autistic women are often misdiagnosed with Borderline Personality Disorder and Bi-polar because of actual or perceived trauma and emotional dysregulation. Autistic women are also painfully aware that they are never fully accepted within their communities and face isolation and relationship difficulties, including with their own family members. These become justifiable reasons to direct blame towards the parent for denying assessments, presume risk and ultimately negate responsibility to the children with challenging behaviour within these families.
Another issue is that if there is an older sibling(s) with a spectrum condition, they too often become the focus of blame as their unsupported needs result in increasing challenging behaviours. These can be cited as triggering trauma, or the younger sibling(s) have learnt the behaviours and used as further barriers to stop the needs of a child being appropriately supported.
The above factors can all contribute to the first potential pitfall, as initially the parent trusts in the belief that she will get support for her child who is struggling. However, when all avenues are blocked and the barriers to effective support seem to multiply, the parent could potentially seek an independent assessment.
The reason this is a potential pitfall is that at a later date, especially during the EHCP process, the initial concerns and requests for support can be used against the parent to substantiate the false accusation of FII.
For instance, many NHS hospitals throughout the United Kingdom do not commission assessment of sensory processing disorder or provide sensory diets. This is despite the knowledge that at least 70% if not more, who are diagnosed with SPD will likely at a later date, receive an autism spectrum condition diagnosis.
Approximately 80% of the UK do not commission funding for PDA assessments. This is not accepted as a subtype of autism and diagnostic criteria for hEDS is being continually tightened which potentially means less and less children/adults are diagnosed.
There are still splits of opinion within the NHS professional community regarding GI mediated and Non GI mediated food. Many believe that there is a difference between GI medicated/Non GI medicated food and their impact on a child’s ability to regulate emotions, increasing emotional vulnerability and reactivity.
Often, parents fund independent professional who specialise in specific conditions, these professionals make specific recommendations, however, despite those recommendations being in the best interests of the child, as they focus on providing intervention to enable the child to cope and reach their potential, further barriers are erected to the detriment of the child. Furthermore, the risks to the family overall intensifies because a parent is now placed in a difficult position.
It tends to be the case that independent assessments identify further unmet needs and make recommendations, these are often disputed, or will simply not be acted upon. The parent will often be told that because the NHS did not assess or diagnose, they will not provide that therapy. This is despite the fact that whether a professional is independent or NHS, they will be governed by the same governing bodies.
The parent then has to make the decision; do they simply accept what they are being told or do they fund further assessments following the recommendations being made to seek clarity of the child’s needs?
If the parents pursue further assessment, this further increases the risk of future false accusations and social care involvement, such as being targeted with child protection investigations. In reality, those within all professional sectors now have sufficient scope to follow the safeguarding path formulated, sited by Chancer for FII.
Let us consider firstly, that these conditions are difficult to conclusively diagnose if inappropriate diagnostic tools or diagnostic criteria is tightened up etc. this then delays diagnosis or increases the risk of misdiagnosis which results in the child and family still remaining unsupported.
As the child’s unmet needs continue to remain because of not having an appropriate diagnosis, this increases the risk to the family. This in turn often will motivate parents to seek answers for themselves. This is often further compounded by the misunderstanding that occurs because of lack of understanding or knowledge of the female ASC presentation which is often misinterpreted.
Furthermore, this can also be used to further justify the cognitive biases within the professional community inferring that the parent is being obstructive, difficult and not ‘working’ with professionals.
This is further compounded by the lack of professional knowledge, training, and experience in relation to certain Atypical profiles and associated co-morbid’s of both Classical and Atypical Autism. One of these which has been highlighted in the media recently is the Pathological Demand Avoidance.
All of the above reasons can and are increasingly being used to justify false FII accusations and illegal S47 child protection cases against families. If there was less ambiguity, division and more cohesion within services, with gaps and loop holes identified and closed, there would be less maneuverability for these false accusation to occur. Additionally, if gaps were closed then time scales for accurate diagnosis would be reduced and children’s needs would be identified.
However, to this would require radical acceptance that diagnostic criteria, pathways and tools need to be holistic, child centered and fit for purpose. Furthermore, services need to be provided to safeguard parents with autism conditions and co-morbid’s from systematic abuse, as accountability and transparency will help to minimise the potential for abuse of power dynamics to take place.
Another issue of significant importance is addressing Chancer’s tick list which is used to red flag parents with ASC. In reality, the fact that it is so specific to targeting vulnerable groups creates a negative cognitive bias, is ablest, involves disability discrimination and potentially breaches the human rights of parents and children. This is because it rights impeaches on their rights to family life,education, health and care.
The false allegations also increase the likelihood of isolation, ostracism and hate incidences via gossip, stereotyping and false assumptions.
Many might presume and voice openly the view that if a parent seeks an independent diagnosis that it has been bought. However, this is not the case because if professionals disagree with a diagnosis, then they are at liberty to challenge directly via the diagnostician. Another issue for parents with ASC who are being targeted with FII because of their ASC diagnosis is that the NHS, Local Authorities and educational provisions can and do try to attack the parent. They will very often force the parent to justify the diagnosis and prove that the diagnosis correct; when in reality this is not for the parent to do.
Often parents are judged harshly within their local community and further isolated because many are unaware of the challenges such as refusal to assess, and the redirection of blame with the parental diagnosis cited as rational. Many are unaware that Autism Women Matters have approached the European Court of Rights with evidence that women with an ASC diagnosis are being targeted by professionals.
Unfortunately, the isolation, ostracism and hate incidences toward parents with ASC increases the vulnerability of the family as a whole, making it easier for professionals to identify more potential factors to collaborate and substantiate their view the parent has FII. The harsh reality is that the false allegations are made towards the parents when they are isolated and often unsupported. The accusations are more likely to be made when the parent has pursued provisions over months, and in seeking clarity has collated substantial evidence in the form of hard copies of SARS, electronic evidence and transcripts.
By this point the parent has learned the importance of a paper trail due to the systematic failings, misrepresentation of truths, misdirection of professionals and breaches in family and SEN laws.Parents become even more aware of the subtle verbal threatening communications which are later denied, which leave the parent open to further abuse of power.
It is clear that in the pursuit of evidence, many parents both ASC and neurotypical learn that the more evidence they gather results in more isolation. This in turn increases the family’s vulnerability to accusations and blocking of services.Ironically, the truth of the matter is, the parent learns that the gathering of evidence is necessary if not vital to safeguard their family from the very professionals they approached for support in the first place.
What is also not fully understood is that the more evidence gathered, the more obstacles the parent will face, including subtle forms of gas-lighting; dehumanisation, discrediting and dismissive use of words within documents pertaining to the family.Local authority documents have been known to use subtle derogative terms when referring to the mum, which give a false impression that there is no factual data to corroborate the parents’ views. This is done towards the parent in the same way as the parent’s diagnosis is used as a tool to silence and control them.
This can and does create professional and cognitive biases which can provoke negative outcomes for the child. Often the focus then becomes discrediting the parent, finding evidence to substantiate the false accusation and refuse the support that the child needs. Unfortunately, this pushes the family to breaking point as challenging behaviours increase, as the parent battles on to try to get support.
One can understand why some or many within a community would have a negative view of a parent and their child or children at this point. To them, what they see is a parent(s) with a child exhibiting challenging behaviours in public and at home. They naturally presume it’s a parenting issue when often the parents are those whose own disabilities are dismissed and not taken into account nor have reasonable adjustments been made.
There are still many who hold the view that unless we have been scrutinised and assessed, that the expectant mother must prove without shadow of a doubt she is not a risk to the child she is carrying because of her ASC diagnosis. Therefore, they believe it is not her right to be allowed to have a family. Unfortunately, this tends to be levied at those who are single, isolated and without an extensive supportive family network.
Once assessed to the hilt, if they are lucky and no evidence has been found to identify risk to justify removal of the baby or young child, the parent could be sent to a parenting unit, like Dudley Lodge, where she will be assessed over a period lasting anything from 3 months to a year under 24/7 video surveillance.
During this time, this mother never knows whether she will be allowed the opportunity to be a parent. This is a terrifying experience.If after jumping through the hoops, she is successful, the next obstacle is accessing the community and developing supportive networks within the community.However, it is surprising how many within the community believe that just because a parent has diagnosis of some sort, then they automatically should have a social worker.
Some people believe that there should be a ‘team’ around the family, that it’s the parents diagnosis and lack of parenting skills that are the issue rather than the many issues facing parents with ASC. They believe that the refusal to provide support, even when requested, is justified and confirms within the minds of many in the local community that it is the parenting which is at fault.The result of this is that fabricating or exaggerating the child’s difficulties will further increase the isolation and vulnerability, of not only of the parent, but also the child or children. This because of the isolation due to the unsubstantiated gossip and hearsay.
It is difficult to believe that these injustices do indeed take place and there is this perception that if a child has needs then it follows that they will be helped. Many are unaware of the pitfalls of seeking an EHCP, such as the increased FII accusations that are taking place since its implementation.
Moreover, a parental diagnosis can potentially block the pathway to an NHS diagnosis. Additionally, parents’ diagnosis is cited specifically to draw attention to potential FII, when parents seek to identify potential SEN needs with the view of seeking an EHCP.Often the first request for an EHC needs assessment is refused. Then a parent goes through mediation,then towards tribunal. Often at this point, the assessment is agreed to.
However, often the professionals who come out to visit do not understand the adult presentation of ASC. Instead they might focus on the many known issues associated with ASC and will draw upon any evidence of domestic abuse, previous mental health issues or what they view as previous maladaptive behaviours.
They might focus on perceived long held perceptions of lack of empathy, attachment issues, lack of understanding of child development, perceived or identified trauma, even if the birth was traumatic.These are often used to minimise the need for the child being observed. Often the focus is not the child but the parent which obscures and blinds the mind of the observer.In reality, using need deflecting causation of behaviours towards parent blame reduces costs associated with the child’s needs.
Often parents are sent on parenting courses but no reasonable adjustments are given, and often are not relevant to the child’s needs or indeed, the adult parent on the spectrum.Often training and courses are not fit for purpose as they do not encapsulate the complex reality of the contributing factors which inhibit the child from being able to cope.
Their focus is often in conformity to a perceived sense of normality that does not exist and is ever changing. This practice ignores a child’s neurology, physiology, biology, emotional and cognitive abilities, along with the Impact of societal views, behaviours and treatment of those on the spectrum.These parenting courses are in reality delaying support for so many children. Instead, the delay can increase challenging behaviours and create more stress.
If the parent during the EHCP process is a person who fights, complains or draws attention to breaches in policies, statutory guidelines, Sen and Family laws, then they are vulnerable to receiving more silencing targeting strategies.If the assessor does not recognise or assess for the ASC or PDA, they become vulnerable to accusations and child protection proceedings.Equally vulnerable are the parents who have obtained independent assessments. In fact, the more evidence collated, the more barriers you face and the harder the fight for support becomes. This is because the more help is refused, the more threats of social care involvement are used by various professional sectors and the need to safeguard your family intensifies.
Currently, many families walk a tight rope with no safety net – one of those being my own.