I didn’t have a pleasant time during my school days. I had friends sporadically but I wasn’t able to relate to other children. I spent my school days either being bullied or befriending the teachers because I felt more comfortable with them. In primary school I was a naturally shy child. I was instructed to write things down when I was communicating with teachers. I was conditioned to communicate via this method by the time it came to starting secondary school. I was pushed head-first onto the cloakroom floor while I was tying my shoelaces. I sustained an injury to my forehead, an epic lump came up. I started having nocturnal seizures not long after this injury. I ended up being diagnosed with epilepsy and given medication. This medication affected my learning and development because the dosage was too high. I was on this medication from the age of eight until I was 11 years old. In 2005, the paediatric consultant was found to have misdiagnosed over 600 children with epilepsy. I had to go to see another consultant for a second opinion. This consultant held the opinion that I would have grown out of the type of epilepsy without medication. Due to not having had a seizure for over two years, I was taken off the epilepsy medication.
After this point, I started having behavioural issues. The trigger for the problems stemmed from just wanting a friend. I wrote to the teachers a lot due to not wanting to be friends with children my own age. I spent years attending appointments at CAMHS but never received any formal help despite being on a speech and language waiting list until I aged out of the system. Unfortunately, due to that lack of help, I was constantly excluded from school throughout my teen years. I left school with virtually no qualifications.
I only managed to get diagnosed with Asperger’s Syndrome due to my dad raising concerns about my situation to the local MP. I was given a diagnosis at the age of 16 by the forensic psychology team in Birmingham which the MP arranged after my dad contacted him. This wasn’t local to me but I had to go to another area because the local mental health teams wouldn’t make a diagnosis nor provide any support for me. I was merely left on waiting lists and attending endless appointments with the local CAMHS team for many years.
After I was diagnosed, the appropriate support still wasn’t forthcoming. I attended college for a pre-vocational course. I was reasonably safe for the first year, but eventually was excluded due to complaints regarding my behaviour in relation to befriending the tutors. I attended a residential college ran by the Priory group for a few months but that fell apart for the same sort of reasons. The police started to become involved as I got older, despite there being no malice in my intentions. I am still haunted by the meeting where I was practically handed over to the police by my social worker and residential college staff. The college didn’t have the psychiatric backup to be able to keep me there. I was already damaged both emotionally and mentally by my school experiences at this point in my life. I was about to turn 18 at the time of this meeting.
I made a desperate attempt to try to reason with one of my accusers whilst on bail. This led to me getting arrested, locked in a police cell for the whole weekend and then hauled in front of a judge. I had a meltdown in the cell and I was literally sick due to the anxiety of the situation. It was made worse by the local police officer speaking about me to a group of other officers in the derogatory and mocking manner of a bully showing off in front of their friends. I was facing charges as an adult for non-violent offences mostly committed as a minor. Those “offences” had been committed either during meltdowns caused by nobody listening to me or by trying to pursue friendships with other people. I was charged with multiple accounts of harassment and providing false information. I was convicted of these offences and put on a Section 37 order. This led to my detention in a low-security autism hospital.
When I got to the hospital, I wasn’t able to even go outside for a fortnight. We had to earn leave to walk the grounds, to get unescorted leave in the local area and be allowed home leave. The psychiatrist had to approve all the above with a Section 17 document. I was quite independent at home but all this was taken away from me due to what happened. I was put on medication. I had no choice but to take that medication because of being on a Section. I wasn’t allowed to refuse: a person detained under the Mental Health Act is legally obliged to take whatever medication they are told they need, whether or not it is appropriate, and it can be forcibly administered if refused. In my case, this meant I was given antipsychotics, which sent me over the edge. Antipsychotic medication is dangerous and can have severe and potentially life-threatening side-effects which can be long-term or even permanent. They are entirely inappropriate for autistic patients and can often make matters much worse, though even now they are still being widely misused by doctors. As a result of my experience I have remained on antidepressants in the long term; I am still on them today. I was taken off the antipsychotics after moving to a residential home run by the same company. I was in the hospital for a year, but only detained under a Section for six months. I attended mainstream college whilst I was living in the residential home, gaining a BTEC National Certificate in Media Production with the grades distinction, merit and merit.
I moved out of the residential home in 2010. Dad had already been ill for a long time and passed away earlier that year. I’m so sad that he never got to see me get out of that sort of place. I miss him. I lived in the local community where I got at least some support for my autism. I became pregnant with Jonny in 2011. I was informed that I had to move area because child services wanted me to live with my mother when he was born. They came to visit me while I was pregnant. I was asked to sign over all my records for them to do an assessment. I was quite willing to do that because I wasn’t aware of the things that had been recorded in my notes which turned out to not be true. I was pregnant with my first child. I had never been through that experience before. I was made to jump through hoops and they constantly moved the goalposts. I also had a malicious reporter adding fuel to that fire. Ironically, they were involved with a support group for parents involved with social services, at least supposedly. I couldn’t cope with the constant interference from the child protection team. This resulted in me having a meltdown and telling someone I knew that I thought I’d hurt my son by accident. I had been to my GP just two weeks beforehand telling them that this involvement was becoming counterproductive to my mental health. The GP reported it to my social worker, then my social worker told the child protection team. The Chinese whispers and consequent misrepresentation resulted in them taking Jonny to the hospital for tests, despite the doctor saying that in his opinion there was nothing wrong with him.
The child services team told my mother she had an hour to get me out of the house before they would allow my son to be discharged from hospital. A few hours later, they changed their minds and I was told that they wanted to take him straight into foster care instead. I was informed that I needed to sign a Section 20 order to agree for him to go into care. Though not legally bound to do so, this was supposedly to demonstrate that I was cooperating with child protection services and taking their concerns seriously. I was only allowed to see Jonny at a contact centre for just two hours a day during the week. He was eight weeks old at this point. This continued to be the arrangement until the local authority obtained a Care and Placement Order when he was 14 months old. They conveniently “lost” the paperwork in support of my case for the final hearing. I was set up to lose the case because all the evidence from my side was never put in the bundle for the final hearing in relation for the local authority’s application for a care and placement order. I was extremely upset after coming out of the hearing and shouted that they stole my baby. I was bundled into a side room by my own barrister and told in these exact words that I had to ‘accept what happened in there, you don’t have leave to appeal, you can’t talk about it and if you do then you’ll be locked up for a very long time.’ I’m glad I had a witness, otherwise I’m sure that no one would have believed that this was actually said to me.
I did manage to get an application back into court to stop the adoption. In spite of this, the local authority still placed my son with another family even after being informed that my application had been submitted. This wasn’t actually legal but the judge didn’t insist that they reversed the placement while the case was still going through court. The adoption ended up being granted. I wasn’t even allowed “letterbox” contact. I tried to make contact with the adoptive parents through the post room. I was told that the correspondence was passed on but the adopters were under no obligation to write back as there was no contact order granted at the adoption hearing. That was in 2016. I’ve never heard a thing from them.
I have subsequently tried to talk about what happened to me. I really needed support. Unfortunately, this resulted in someone making malicious accusations based on what I had told them in confidence and taking me to court for harassment multiple times. I was consequently subjected to an indefinite restraining order. I had no idea how out-of-control the situation had become until I was sent before the magistrates and told to plead guilty, which I was not happy about doing as I didn’t agree, but I felt coerced into doing. It made no difference as I was sent to prison for six months anyway, though at least I was released after “only” one month which is how long it took my appeal to be heard. My immediate release was ordered. So immediate that I was left stranded without my car keys, phone and medications which it took them a week to send to me.
Despite this, I managed to pass all my GCSEs between 2015 and 2018: maths, English and other qualifications I had missed at school. I paid privately to put myself through two of the subjects. 2018 was an additionally difficult year because I lost virtually all my benefits after the Department for Work and Pensions “migrated” me from Disability Living Allowance to the newer (and harsher) Personal Independence Payment. I had to take my appeal against the DWP’s decision all the way to a tribunal in order to get everything reinstated. I had PIP granted for only five years: this means I’ll have to go through that awful process again before I know it. I haven’t had any support from the local authority in two years despite apparently being left on a Section 117 aftercare agreement. The support I was offered for my autism in my current area hasn’t been helpful. I didn’t feel I was at all understood by the support services that I was allocated previously. I never felt like they listened to me or took any of my needs or even feelings into account. This has always been a factor in this locality. I tried to open up to other people and subsequently got convicted of harassment.
Published in 2019
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A blog written by a woman diagnosed with Asperger’s Syndrome but suspected PDA in more recent years. Diary of a Painfully Shy Introvert was started to not only create awareness of the PDA part of the spectrum; but also to educate the public hopefully creating understanding in order to stop future generations being let down and labelled negatively.
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Disclaimer: There may be parts of this blog which viewers may find upsetting as it contains accounts of real life events which have been quite traumatic. However, it is all to help create a sense of understanding and combat the fear surrounding all aspects of mental illness and Pathological Demand Avoidance Syndrome (a very little understood part of the autistic spectrum).
2 responses to “About Em”
Wow Emma, I’m so sorry you have been totally abandoned by the system and any support systems you have had in place. Your story is a perfect example of why better, mental health and psychology based interventions are needed around the world. What happened to you is wrong and there should have been better, more empathetic supports in place to help your through the entire process. You deserve better than what the system is offering and so many people just like you deserve better too. Where are you at now in the process? I think based on your timeline you’re about to enter into the process again of asking for disability support?
I’m not asking for support. I’m asking to come off the 117 aftercare thing which is supposed to pay for these things. I don’t want to be on that clause anymore because the info from my past can be accessed and used against me if I have any more children.