Autism - What do people really see?

Every holiday is not the easiest time for me and I stopped celebrating these special holidays a long time ago! It brings back bad memories of my childhood and holidays for my children has always been a total nightmare.

This is a long blog, but a lot has taken place over the last three weeks and I need to share, while it is still fresh in my head! No two autistic families are the same and we all have to respect that and don't be so hard on another autistic family, cause what works for you, does not mean it will work for them! And that is what professionals need to understand too!

This year the Annual World Autism Awareness Week (WAAW) was held between 1st - 7th April, but the official date is 2nd April for World Autism Awareness Day where events take place across the World.

Still we have along way to go as Central Government, Local Councils, Clinical Commissioning Groups, Health Watch, NHS, Police, Criminal Justice System, Family Courts, Criminal Courts to just society realising how much autism is overlooked and does need to be addressed with autistic people and their families included in decision making. It's important in hearing the voices from autistic people as they will know better of what is needed in making a difference for autistic people than any neurotypical (NT) person.

2 Years ago - Mayor Hustings - Has there been any changes since 14 April 2016?

On the 2nd April the launch the 1st Edition of Girls and Autism book, by Barry Carpenter (Editor), Francesca Happé (Editor), Jo Egerton (Editor), Baroness Sheila Hollins (Foreword). My contribution was to write a chapter on "Black Girls and Autism". Many people say, autism is all the same, yes autism is the same, but how communities deal with autism is very different and that is what causes divide and lack of services when supporting BAME families.

The launch of the book was held at the Raddison Hotel, Marble Arch hosted by NAHT. I was grateful in attending the conference and I also held a workshop that reflecting on the chapter in the book.

The highlight for me was hearing Carrie Grant and Sophie Walker's daughters presentations and also Limpsfield Girls an insight to those who have never able to hear the voices of girls and women on the spectrum. All the other speakers were fantastic, but Pathological Demand Avoidance (PDA) continues to be mentioned, but when speaking with teachers and even social workers, they are still oblivious to this! What hope does any child have if, the education system denies the help for any child with a neurological condition.

Had flashbacks of what my daughters had experienced in their early years to where I am now, being told that there isn't anything wrong with my daughter's that it's me imagining things and I need to get on with my life. Hearing presentations from autistic people, specialists, researchers to just speaking with educators and professionals who wanted to find out how they could make difference, to improve and to understand how autism differs in girls.

So many girls and women are being failed and overlooked, because they don’t fit into what looks like autism, so much focus on boys. This does need to change. Such events are needed across all boroughs and counties in educating professionals, organisations, parents and it’s important to look at extended families as they can be the cause for challenges within the home.

Life has been tough for me, but I am grateful for those who have remained consistent, patient and understanding to my world and not to force me to conform to their ways. No one has the right to infringe their beliefs on you, especially when they have no understanding to your family upbringing, home life and how autism affects your child. Still they need to be careful with their neurotypical mindset on how they advise! And they do struggle to understand.

As parents of a child or adult with a hidden disability, we have to stand strong and not to allow others to push their views on us. They may feel they are doing us a favour, but in fact, they are just adding to the problem, when already we feel traumatised and hurt by the way we are treated constantly everyday. Trust can be a major issue as we are left down time after time with people preemptying what they think about the child exhibiting behaviour that in their eyes is unruly children, but clearly when our children are expressing themselves it can be seen as abrupt, rude and need punishing.

I have noticed the difference between an autistic child, autistic and ADHD child to an ADHD child. But to the professionals, they all look the same! Bad, uncontrollable and need to be disciplined for bad behaviour.

I remember when telling someone, that I wanted to stay away from everyone. Not realising what I had said, it was seen by many that I was having low mood and feeling suicidal! This was incorrect. And it is true mud sticks, when people do not want to step in and undo the damage caused by hearsay or gossip, cause my behaviour seemed odd! I just had enough of the insults and false accusations being made of me and my children.

What professionals and many NT parents too need to understand, we are constantly been told that we are parenting our children wrong, we are making excuses for them, our children clearly understand and that their diagnosis is always a block for any NT person to figure out. They don’t realise, the only time parents of autistic children may feel at ease is being around others that live it and understand it. Too many demands can push any parent over the edge.

Being around others with similar experiences maybe draining at times as new mums want to outpour the challenges they have experienced and glad to be around others who been there. I get it. It is important to know where there are ASC groups that are offering the support and me time for parents, instead of some groups only looking at what they can get for themselves.

We need more ASC groups that are not scared to talk about the cultural differences, taboos and class without being offended. It has worked for me to address issues that I have experienced and from other concern parents and professionals, not forgetting autistic people too.

I am seen as ignorant and argumentative, but if people constantly keep telling you the same thing over and over again, why shouldn't I be angry? I have a right to feel the way I do and I am not alone. There are many parents who do get fed up, give up and allow to be bullied to agree with anyone to have peace. This is wrong!!

Unfortunately, we constantly hear - cutbacks, you don't meet the criteria, your child is coping well, you look fine to me , are you sure that really happened? Where is the father, is there anyone else in your family that can help? What about your friends? This is the one question that I find funny! We are told about safeguarding issues, then they ask.. What about your friends helping? It is even worse, when they come around your home looking for something. A clean home and everything in place may look good in a report, but that can be just as bad as an unclean home, a death trap. But how do families come to this strange in their life. My case, I was told I was crazy, mentally ill and a controlling freak.

Majority of the time, people may know your story, but don't realise there is only so much you can do! There is only one of you! Has anyone amongst you thought of your wellbeing? Have they asked "HOW ARE YOU? It's a good thing, I have built friendships and there are good people out there. It just takes time for people to understand your family dynamics and to respect your child's diagnosis.

For us parents, we are still trying to do our best with our children. There is a severe lack of ASC services, activities and support for our children, especially after school activities, weekends and holidays. We are tired, cause we have to continue be strong for our family, we are constantly challenged by everyone, there are many parents constantly having to prove themselves always on edge proving that they are not abusing and/or neglecting their children. This is how I was made to feel, until I read my children's files and realised how inaccurate assessments and reports can destroy families.

Yes! There are some bad parents and professionals, who make bad for us proactive parents.

People assume all is well with me. I don't get any support for my children (I am told it is my fault for how I live, hmmmm these people have never taken the time to listen only judge)!

ASC is one of those conditions that everyone believes they have the answers to why your child behaves the way they do, but do not take the time to read, attend events and to understand that their way of thinking is insulting, offensive and draining. It's always us, the parents against communities and professionals. I was told years ago "you make your bed, you lie in it" that friendship ended and I never looked back. People are insensitive and naive, TV programs still glamorise autism and are still missing communities!

Many families remove themselves from people, to prevent oneself getting stressed out.

For those who have not followed my journey over the last 11 years. The Youtube - Living with Autism - Nathaniel's Story recorded in 2011 - I got criticised for recording and showing this (but at least I hid my children's faces), but imagine if there was no evidence of what my son accused me off. People would say I was a liar.

Self harming has caused problems for many families and schools so quick to call social services, (yes, aware of why they do this, but too many innocent families with autistic children mistreated, cause of lack of understanding of ASC).

Professional do have duty of care of the child to investigate, but for majority of parents with a child who self harms or has sensory needs is overlooked. If Social services, schools, police and even family courts were ASC trained, things would be more easier to spot.

There are people around us, who would lie and fabricate the truth, yet no one is willing to take the responsibility in finding out the facts and to making sure they have made the right choice.

There are parents and carers who will wear their problems on their sleeves and can be misread wrong, then you have the parents who learn to play the system, children are well dressed, well spoken, great achievers, 100% attendance at school, have a good job, married and have a nice life!! But people get fooled! Friends get fooled! Family get fooled. Yet problems are revealed, the observer will still have something to say. All eyes are on you!!! You still judged!

Living with Autism - 2011

At the time when Living with Autism was filmed, I was told that my son was acting up cause of the camera and that I was seeking for attention but the camera don't lie! Cause my daughters who was ignored! I am now picking up the pieces. I am no longer a shame to speak out on the failures as too many families suffering in silence. I hid my children's faces to protect their identity. No matter where you are with your children pending a diagnosis, waiting for the results or just received. Embrace your child, love them and make time for them, don't allow anyone to discredit your child. I went through years of questioning myself and started to dislike people as they would tell me I was a liar! My children have made me realise that, you only have one chance! Please listen to those who have experienced it! I am sharing my story as WAAW 2019, I have met so many families and autistic families crying out for help! Whilst I am still asking for help.

2017 to date

If you watched the Living with Autism in 2011 - now living with teenagers aged 13, 16 and 18 years old in 2019 to date. My youngest daughter was diagnosed as having ADHD; Severe Receptive Expressive Language; Autism Spectrum Conditions (ASC) and Benign Rolandic Epilepsy between January 2017 and March 2018. 

My middle child - my son - was diagnosed with autism and ADHD in 2008 as stated in the video. 

My oldest had left my home in 2014 to live with her grandmother without my consent, but returned to my home in 2017, for her graduation from school in June 2017. 

It was no surprise to me when she was diagnosed with Moderate Language Difficulties in April 2017 but I did not receive a letter confirming this until after she gave birth to a son on the 4th September 2017. A diagnosis of her having ASC is pending and she still resides with me. It’s evident she struggles with social communication language, I found out she was official at seven months pregnant, I delivered my grandson at home as she wasn’t aware she was having contractions. 

I am still traumatised by delivering my son and still coming to terms with it. I cried whilst delivering my son, but had to call friend to come and help as 999 said it was not an emergency. The entire birth partner thing didn't go as plan and looking back NHS and social service could have dealt with things better knowing the family history. There is no help or support for teen mums with additional needs and the support for grandparents if they live with you is zero. If there is a service out there please let me know.

I am told I am always busy, but you tell me how would I have learnt about ASC and the different perspectives, if I didn't go the extra mile in making sure my children would be safe. I am tired of the constant battles with the local authorities, social services and the system, how they mistreat people, the prejudices, the discrimination, the accusations. It takes for someone to really listen, to do their assessments correctly and take accurate notes and to look at the family dynamics, not just in the home, but outside influences of the extended families and in laws (but that is too much for them to do - blame the mother is more easy).

Why is it that mothers are forced to attend parenting workshops? Yet the absent father, part time father, whatever the reason for the father no longer in the children's lives are given an easy ride! Fathers should be summoned to these parenting workshops too, or to provide father only parenting groups as they have many underline issues that get swept under the carpet and not addressed.

CEO Mark Brown - Special Help for Special Needs has been a great support me and family, since 2010. Running a range bespoke workshops, 1:1 support for autistic children their and family and professionals too. Independent support is how I was able to understand more about my sons, needs and connecting with autistic people. Michelle Billington was late diagnosed in her early 40's with autistic, mother of six children, four have autism. Gave online support, in the early hours of the morning advising me on his sensory needs and why he was struggling in school, back in 2008. To date we still remain in contact via social media, I have never met her or spoken to her, she is based in Manchester.

Heard of too many cases of family breakdowns, from both sides of the families in denial of the diagnosis blaming what side of the family it came from, it like it is a disease, contagious! Fathers and families who are in denial, cause more damage, if caring for the ASC child and don't respect the diagnosis. When ASC child returns home, the mother has to deal with meltdowns, misinformation being circulated and mother seen as controlling, when trying to correct the NT family member and friends. If you are a mother experiencing this, you are not alone. There are many mothers and autistic mothers needing support, but scared to speak out for being penalised and being watched.

The issue with the social services and other unskilled professionals understanding neurological conditions. They will not have the understanding of ASC and other related conditions that exhibit negative behaviour as the training is basic. Unless they specialise and have had intensive and ongoing training in ASC. What we face as parents, we are overwhelmed by demands from everyone, but so little support to realise we need different type of help, especially if you are single mother and this is not hearsay, it's FACTS.

We are made to feel bad and incompetent that we are caring for our children wrong. But if they have no understanding of ASC, how do they get away with it. Safeguarding, child being put in care is a fear factor for many families. I have spoken to many mothers, couples also, and the behaviour of how many professionals can just get it wrong and no apology when the evidence is produced, that the child has ASC and not the parenting abusing their child! Dysfunctional families have been generalised but for me I asked for help and instead professionals looked at me. Poor advice, poor assessments and poor representation led me to believe that until communities come together and speak about their challenges with how the system has failed them. Then maybe this will help the next generation.

Do the maths! Look around at the many of these ASC conferences and groups, full of women, lacking people from the BAME communities and Dual communities! There are organisations and voluntary groups claim they meet the needs of the Autistic people and their family and the BAME too! Really, they must be reading different websites and have a fantastic council then...

I don't really care where these fathers are! But the damage caused by absence of fathers and men who are given an upper hand when social services step in to say, the mother needs support, not realising there maybe underlined issues that many professionals overlook such as domestic abuse and violence, control, manipulation, historic history, etc exposing the ASC child to more trauma and confusion. Yes, mothers need respite, but things have to be done proper, not a quick fix! And need for more men representation to come forward.

If other parent and family members are in denial about autism and any other hidden disability! Our children will be damaged for life, I have seen the damage to my children when they ask questions that I can't answer as they see things for what it is! But the many professionals keep silent! And continue to pressure the mother in to compromising to safe money.

My journey has been a rollercoaster ride and have learnt alot on my journey and met wonderful individuals and organisations and not such lovely people (I say no more).

Generalisation has caused disputes amongst parents with autistic children and actually autistic parents bringing division to discussions within autism groups which are led and operated by neurotypical parents and organisations.

Considering that the Black, Asian and Minority Ethnic Community (BAME) and Dual Heritage Community are also included in this, you might get an understanding of how members of the public will find this challenging and especially in the areas where diversity is not as much as it is outside of London.

As in the video earlier. Despite four tribunal appeals in my son's favour, does not mean the local authorities and social services followed through with all the recommendations and assisted me.

I thought things would get better, but I was wrong. You realised that there are people around you, think you are the problem, cause they can't see the fuss, only that you have a bad behaving child, who needs firm boundaries and a loving mother. While on the other hand, my daughters suffered in silence during this time, their mental well-being has deteriorating because of this. My parenting skills continue to be challenged, this is not an isolated case. I know of many families across the UK who are in urgent need of assistance and support for their autistic children and adults. Autism does not discriminate, it can happen to anybody.

 I actually know of autistic adults who do not want to disclose their diagnosis because they fear that their children will be taken away. I have supported a young mother who lost her son who became a ‘Ward of Court’ in 2017 but one year later she was diagnosed with high functioning autism, Vitamin D deficiency and other complications. 

The Family Court system in my opinion has no real understanding of autism and would not make any reasonable adjustments for this mother as her son also was near to death and was found to have rickets. It was a serious case and while it was being established how he became ill, she was failed by social services, adult social services and local authorities too. And never received the right support, even after her diagnosis, she continues to seek for advice in getting her son back. Sadly, she has been denied this and wants answers. She has been seen as overbearing, controlling and a risk to her son.

In my opinion like any mother and looking at myself, we are judged, we need for more mothers (fathers) to come forward to speak up on the failures of the system. Too many autistic people are speaking up of the damage caused by their parents wanting them to fit in or just wanting to cure them of autism. And this still is going on behind close doors.

Coming back to this young mother. It was clear that she needed support, guidance and other interventions to help her gain the understanding of her new diagnosis. Her son was later diagnosed with autism and it was believed that due to her having Vitamin D Deficiency attributed to why he fell ill. 

During the Family Court proceedings, she was able to recall everything that led to her son becoming underweight. Her honesty was her downfall and it was felt that she knew what she was doing. She gave too much information but me listening to her, she was asked the questions and she answered honestly. Her family rejected her diagnosis and wanted her to stop using her diagnosis as an excuse for neglecting her son. The challenges that this black mother faced is just one of the many experiences that the general public do not hear about and does happen across all communities.

But for Black communities and other communities to understand autism, they need to accept the condition then they will able to support their loved one. Without any family and friends support, we will continue to be seen as overbearing, crazy, making up stories to be heard!

I had no reason to lie about what I was going through, but with my daughter coming back pregnant. I question how society are mistreating teen mothers, disabled mothers and autistic mothers. More needs to be done!!!

My 18 year old daughter is now a young single mother and she has a neurological condition. I fear for her as the services are not geared towards young mothers who have autism and other related conditions. The demands and expectations of her raising a child means that I have to assist her with his care. I am tired and exhausted as I have to deal with three teenagers who each have different emotional and social needs, but the lack of support for me - their main carer - is never really looked into. I just have to get on with it! How many other families are going through this as I can't find any local or national groups that can give me advice or to match my daughter's needs!

Grooming and Exploitation!

I am fearful for many young people who slip through the net. My concerns are about safeguarding issues; internet safety; grooming and street safety. County Line and grooming is becoming more prominent across the UK. I don’t believe it is just black youths that are being targeted and at risk, but there are many undiagnosed youths being excluded, expelled or placed in alternative provisions such as Pupil Referral Units (PRU). 

My youngest refuses to attend school and was given a place at PRU when she was in Year 6. She regressed immensely. The local authorities and PRU believed she had an attachment disorder and was copying her older brother’s behaviour. He resided in a residential school in September 2014 as I was unable to manage him, her behaviour was different. But still my parenting skills was questioned.

I do not want to use the colour of my skin and call it out for what I think it is, “discrimination; prejudice; racism or whatever it is” but the fact is that culturally biased professionals have for many years used other factors to make assumptions and misjudge the educational rights of my three children.  

I have read my children’s school reports and assessments compiled by professionals over the years. I am angry for the years of delay and dispute from the authorities as my daughters, suffered a great deal.

Many teachers focus on behaviours and refuse to acknowledge the official diagnoses separating the behaviour from autism, what hope does any autistic child? Reasonable adjustments as suggested in EHCP’s are denied or overlooked, using the teaching assistants for other pupils in the classroom, due to staff shortage, not realising the underlined issues that the ASC child is experiencing and the constant comparing the ASC child with the NT children in the classroom needs to stop. But then we have parents who assist their ASC child has to fit in? I have to question this who is it benefitting as I have listened to my children, and believe I have failed them for many reasons as my home is a battlefield.

The challenges that many autistic people and their families face is the lack of understanding between the local authorities, social services the NHS and the education sector. Unskilled professionals make decisions based on what they think they understand from one or two days development training. The best advice in my opinion, is giving autistic people the voice to help educate and support neurotypical professionals and parents to understanding autistic children.

 We all know that one size does not fit all, but the journey does not stop here for me. I am an overcomer of childhood sexual abuse and domestic abuse but instead of social services offering me support to meet my children’s needs they focused instead on me and blame my childhood experiences for my present failings of my children and questioned my mental wellbeing.

My family, my ex-husband and speaking within the BAME communities is a challenge. There is a serious lack of representation, resources, and data in offering support to BAME families who are in denial and refuse to get the support for their autistic children, due to stigma, family tradition and custom. Many who will read this would say "why you airing your dirty linen in public" - Really, so when I get people telling what they have heard about me, but have never been in my home, spoken with my children, read ALL their school reports, attended meetings, team around the child, appointments, assessments, late nights, travel near and far to get them places cause I have used all my savings to give them the best.

They don't care about this! I have years of recordings of my children as a videographer, I would film my children, but looking back you could see the ASC and ADHD traits, but to everyone the "pickney" was just bad, no manners and I was accused of living of my son as financial gain! To make this clear to those who feel they can run their mouth, but have NEVER helped me. I volunteer in my spare time and have wonderful individuals and organisations that support and advise parents and professionals around me, who are being treated like me. Without attending many of the wonderful ASC events, I would not have been able to meet parents like me and professionals and specialists who want to be heard in the wider communities.

I have gone through alot of abuse from every angle, but will not allow this to break me! All I would like to see is a safe place for autistic children and adults to feel they can be themselves and not force to fit in cause they don't act like neurotypical society. I do not fit into anyones world and I don't want to. I don't do cliques, but love helping others and in bringing people together, which I know I am good at!!

Working with two service providers like the Cassandra Centre, who support young people and families that have experienced domestic abuse and violence, and the Soapbox organisation who offer mentoring to young people who are caught up and involved in crime, are services that are needed to help break the taboos around street crime, provide healthy relationships programs, keeping safe and preventing grooming, especially when outreaching to BAME Communities. We need to see more ASC organisations working in collaboration with each other and not in isolation. I have remained resilient, containing a lot of my frustrating in helping others, but found it becoming more distressing when the silent voices remain silent so not be penalised for feeling and being different. But I know they are not alone.

Black women and Autism

Many Autism groups are unable to meet the needs of all families

FACTS that I have witnessed:

•      BAME families and poor white families have the same challenges and experiences

•   Sickle Cell Anaemia need to make sure autistic children are checked

•   Pins and Needles - youngest daughter was tested and had Vitamin D Deficiency in 2018

•   Asian woman with ASC son, told me that pins and needles can be signs of Kidney problems

•   Severe lack of awareness, knowledge and acceptance about ASC in BAME communities, this also includes the BAME health professionals and educators who can also be culturally biased – this can create disputes within organisations

•     Severe lack of representation of Black and Asian autistic females

•   Need to address the needs in ageing autistic people and not just dementia

•      Lack of diagnosticians, affordable and culturally appropriate screening tools

•      Misconceptions surrounding the cause of ASC symptoms within the BAME Communities

•      Symptoms often related to supernatural forces, causing parents to seek the help of spiritual  healers for cure – demonic spirit

•      Self-harming is overlooked; parents can be accused of abusing their children

•      Sexualised behaviour mistaking a child as being abused

•      Dual Heritage is not just Black and White

•      Lack of research and/or estimated statistics on BAME participation

•      BAME families maybe in denial due to cultural upbringing and belief

•      Medication – greatest fear for many parents and they need to be re-educated in these areas

•      Black people and MMR – Stigma, accepting a label, HFA children more acceptable, but their social needs ignored. Those at the LFA are a different issue, families kept silent

•      Low numbers of BAME professionals

•      Family Courts, Criminal Courts – culturally biased, misconceptions about autism and unskilled magistrates and paralegals

•  Home schooling is becoming a easier option for families, due to the lack of understanding in schools and academies.

Is central government really doing enough? I don't think so!

There are so many angry autistic people and their families requiring support and the local boroughs continue to deny the support and work with ASC organisations that can give better advice and solutions!

TRIGGER WARING: Junior: The Terrance Cottrell Story (2006) This is one story that shook me up. Had the opportunity to connect with the Filmmaker/Director - John Haderlein.

Will be continued....