We can experience isolation within our communities, family relationship breakdowns and our children’s behaviour often deteriorates because of their needs remaining unsupported. Adding to the mix are the educational provisions who deny needs, are unsupported and will actively work against the parent rather than collaboratively. The child’s mental health and well being suffers as they struggle within educational provisions that cannot or will not meet needs.
This is where our children can become isolated and bullied by their peers and even educational professionals within the setting who have little or no understanding of their needs. We often hear of illegal exclusion, off rolling, the use of restraint, punitive punishments, isolation booths and rooms; we hear of the continual focus on weaknesses not strengths, we hear of children developing extreme anxiety based phobias around educational settings and sadly children are known to have taken their lives because of their toxic school environments.
Conversely, a parental diagnosis of ASC seems to afford many the opportunities for redirecting blame to the parent, whilst the school denies that they cannot meet needs. From misapplying policies to threatening the use of social services, parents can become scared to voice their concerns; this fear might be overwhelming because often it is the child who pays the price.
Often the child is blamed for the behaviours of others and the parent blamed for the resulting behaviours their child displays when it all becomes too much. School refusal due to anxiety, stress and PTSD can be triggered by educational settings. EHCP’s are often not fit for purpose; those of an acceptable quality do not guarantee support if they are not implemented because of lack of funding.
It is also an unwritten but recognised anomaly that children with SEN are often denied the opportunity to sit exams in their last years of school. Often schools do what they can to permanently exclude children so as not to affect their school performance scoring. Children who have school phobias/anxieties can often be referred to CAHMS which again use parental diagnosis to justify rational for the child’s behaviour. Often parenting courses are the first point of call but the family dynamics are overlooked and in reality this delays support.
Blaming the parent, using the known associated difficulties adults on the spectrum have, suggesting they need someone to teach them how to parent, these are all tools used against the parent. It is portrayed as if the parents’ difficulties are learnt by the child and can simply be unlearnt, with the use of compliance therapies when recommended.
These compliance therapies are not only supposed to be implemented within educational settings but are also to be enforced within the home to ensure that parents become less reliant on professionals. If the parent cannot be bought into this, they are viewed as the problem by educational provisions but also other professionals.
This exposes the autistic parent to further scrutiny and increased vulnerability. You may wonder why. Many within the autism community speak openly and passionately regarding the negative effects and increased risk of PTSD and suicide.
This is often due to excessive masking as compliance therapies are used. Those parents who empower themselves with supportive literature; who view these therapies as problematic can become targets. In reality, the one way to ensure a parent has to agree and use these therapies is to remove their parental rights in part or totally.
To do this, safeguarding concerns would have to be raised until the point where successfully upheld. The use of social services as a direct or indirect threat is another stress often applied by professionals. These policies are very often misapplied and unjustified.
For the parents who are single with ASC or other disabilities, the risk increases as who is there to validate the reality of your family’s situation?
Single parents are often isolated both within the local community and educational community. Therefore, educational provisions will have staff ratios to substantiate their claims, or discredit our experiences of our child’s behaviour, pretending they are fine when the reality is they are continuing to struggle.
Placing the whole family under continual strain – this is another reason accurate paper trails are vitally important, but the reality is, a parent who fights becomes the problem parent and certain known traits are misused to discredit the parent.
Once a parent is subject to Child Protection, accused falsely of Fabricated or Induced Illness (FII) or other safeguarding issues, it is easier to enforce the interventions being used. Unsurprisingly, this is very often because the parent(s) becomes so paralysed with fear at the prospect of losing their children, they feel and are likely to be between a rock and a hard place.
The parents’ fear is used against them as it is much easier to redirect blame and responsibility to a parent and even the child than implement costly therapeutic supportive therapies, provide specialist equipment and carry out environmental changes. Instead, the enforced therapies which teach a child to be compliant, produce masking behaviours where the child begins to lose their identity.
FII accusations, illegal Section 47 assessments and child protection can and does impact EHCP’s negatively and very often resulting again in additional stress for the whole family. So many breaches of the law take place, it would seem with the brief to minimise the needs of the child because it would seem, of the high costs associated with supporting the child.
School complaint procedures are often long winded taking months to complete. There are often multiple complaint levels to negotiate through providing collaborative evidence to substantiate your complaint. These must be completed before escalating outside of the school or Local Authority. The only option after this is either the Local Government Ombudsman or in some cases the Department for Education but not until parents have tackled every obstacle and jumped through every hoop, all of which delays solutions to support the vulnerable child and affords the school or Local Authority additional time and opportunity for action to be taken to reduce the impact of the compliant.
I wonder how many are aware of the anomaly that appears to take place during complaints procedures of staff leaving often justified but means the professional setting can legitimately state they cannot interview this individual in relation to your complaint; again making it difficult for parent’s complaints to be upheld or for accountability to take place. Or that part of the complaints cannot be undertaken if their child is no longer in that setting.
Another anomaly that appears to occur during this process of seeking support or indeed securing an EHCP is the professionals who are supportive suddenly moving on or initially promising lots but then bow down under the pressure of senior management. Parents do not have this option of leaving to avoid accusations and investigations often falsely levied at them.
Those parents who have been falsely accused have no other option but to defend themselves and prove their innocence as they are presumed guilty with the threat of losing their child or children. They face the potential of family break down under the strain of not only their child’s unsupported needs, school refusal, possibly child VCB (violent and challenging behaviour) due to anxiety, all whilst trying to defend and prove their innocence, establish the detail of their child’s needs and negotiate the many loop holes, lack of culpability and power dynamics that professionals and professional settings can utilise to avoid accountability.
This all contributes in part to potential but often eventual family breakdown which unfortunately discredits the parent and nullifies the collated evidence, as the parents increased susceptibility to depression, anxiety borne from life experiences as a whole and the stressful journey to support their child ensues.
Many children are increasingly experiencing severe mental health issues triggered by numerous factors stemming from the slow drip feeding of their lesser worth, societies difficulties still to understand the complexity of their needs, especially those with hidden disabilities who continue to experience isolation, bullying, ostracism, hate incidence, exclusion within not only their local communities but educational provisions, and after school activity groups.
The stress of trying to conform, to be accepted, the effort of masking exhausts them, the buildup of stress hormones throughout the day resulting in delayed effect when they get home. Their unsupported needs creating frustration, confusion and anxiety. The punitive punishments for simply for being themselves. The sensory overload, overwhelming environments, the hurtful comments and behaviours of others. The feelings expressed during meltdowns or shutdowns. The stigma associated with their behaviours viewed socially unacceptable as they try to regulate their emotions. All impact on their mental health and well being.
Their families too under the strain begin to fracture and break; the knowledge that their diagnosis of ASC is used to justify their child or children being denied their human rights of education, health, care and potentially their family.
Despite knowledge of the potential breakdown of the family, support is denied for so many reasons and rational provided to do so as blame is to redirected back to parent.
Eventually, worst case scenario can become the reality; young children and adults taken, removed, sometimes younger siblings under the guise of safeguarding risks and via false accusations, as the children self-harm, attempt suicide, SEN VCB escalating beyond manageable levels becoming too much for all involved, attributed in part to the many systematic failings, lack of support leading to family breakdown mean the professionals have no choice but to do so. This could be drastically reduced if support and appropriate intervention were implemented earlier, but this is not the case.
Thus the cycle continues with children and young adults removed from their families, institutionalised, struggling to cope, experiencing abuse of power dynamics, trapped in a system that is failing, destroying life opportunities.
Even when you leave these institutions, your freedom to be all you can be, to a have the life worth living, reaching your potential gets lost and your life experiences used in a game of power dynamics; our lived experiences used by professionals to justify their claims that we are a risk to your child if we become pregnant.
Employment opportunities are reduced because of the behaviours used to self-regulate whilst trying to cope in a system that fails so many children and families. The missed opportunities to reach our potential because the support, reasonable adjustments and equipment that could have improved not only our quality of life but help us reach our full potential, yet the support we as individuals, and our family’s needed was never provided and still isn’t.
Parental diagnosis is the catalyst, the justifiable reason; the child is lost as the focus is on the parent, the diagnosis, the weaknesses perceived or real risks borne from being in care in residential settings and ATU’s and other psychiatrist institutions. The resulting mental health issues and perceived maladaptive coping systems used to self-regulate as children grew and developed unsupported, needs unmet and the many systematic failings and exclusion from society. What is rarely acknowledged is that the systematic failings took the young child, adult down this route.
These continue today with the support of safeguarding tick lists used by social services and Chancers FII flagship used by professionals in all sectors to falsely accuse and deny support which eventually contributes if not causes family breakdown, especially with the other stress factors experienced by the family as a whole in their efforts to help their child(ren).
As I mentioned in my previous article Parental Asc Diagnosis, the core issue is the lack of money and provision to meet needs. Families left to break. Children’s mental health suffering as a result, many requiring admission to units that perpetuate the cycle due to corporate parenting.
Simply having ASC or a hEDS (Hypermobility Ehlers-Danlos Spectrum diagnosis) is viewed as a risk by many professionals’. Unfortunately, society’s view of ASC adults leads to isolation and ostracism such is the belief perpetuated by outdated stereotypical images of what ASC looks like and what they believe we can or cannot achieve or be; for example, we should be thoroughly assessed before being allowed to be parents, have intensive social care involvement throughout the children’s lives thus perpetuating the negative life experiences of children and adults today and into the future.
I write this as an adult ASC survivor, who as a child experienced many of the institutions and systems listed above. I am now a parent who is also experiencing more injustices, whereby a past I had no control over is used against me.
Unfortunately, this is the reality of many whose lived experiences and the ensuing consequences of systematic failures towards them as children, continue to be ignored, silenced or viewed as over-exaggerations and discredited.
Life in care, residential settings, ATUs and other psychiatrist institutions, is this what parents want for their children when they become adults?
Most certainly not, however, if nothing changes, then nothing will change; the cycle will continue. The same stories will continue to be retold by the future generations, unless the existing systematic abuse that is currently damaging thousands of innocent people’s lives is challenged and completely eradicated from society.