One Autistic Mother Struggles to Support and Advocate for her Family

In this thoughtful article, we gain an insight into the daily struggle with the education system for a family that lives with autism throughout.

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  • I am an autistic mother to six autistic children.
  • “I nearly lost my older child to suicide and drugs over the past year. It was, I believe, a result of him not being understood by the principal or staff in his school.”
  • One of my daughters, who tries so hard to fit in, also struggled in secondary school. I had to remove her from school and concentrate on her physical and mental well-being.
  • She now knows that it was not her fault, but the problem was the lack of autism knowledge and understanding on the part of teaching staff and professionals who were working with her.
  • My other daughter, also in secondary school, is struggling.
  • I have two other children in primary school, who are also struggling.
  • When I try to engage with her teachers, I am met with defensive correspondence.
  • The schools appear to have very little information, knowledge or understanding about autism and how it impacts the individual.

I am an autistic mother to six autistic children. Like any other family, it is love and understanding that binds us, but our struggle to advocate, be understood and supported as autistic family members when work with professionals, therapists, schools has nearly torn us apart mentally, physically and emotionally. As I write this article my chest tightens. I remember the last few years.

 

My older child who I nearly lost to suicide and drugs over the past year was, I believe, a result of him not being understood by the principal or staff in his school. This misunderstanding caused him to be suspended and victimised by the school. He was suspended/prevented from going to school because he couldn’t wear the school trousers, due to his sensory issues. He was put in a room for hours until he apologised for not wearing the trousers. When I attempted to explain to the principal about his sensory issues I was told that I would have to provide professional evidence to support my claim – but the principal during my conversation informed me, that even if I did provide this evidence it wouldn’t be accepted by the School. My son subsequently suffered huge anxiety and mental anguish over the way the school has treated him in that he has attempted to take his own life and subsequently abused drugs.

 

During this time, he started to attend a psychologist with a background in Autism who used CBT (Cognitive Behaviour Therapy) with him. However, in his approach he was trying to get my son to see the consequences of his actions, which just added to his anxiety. It’s only when I told him he didn’t have to go back to school, that there were alternative ways to get through the school system, and removed him from the therapy, that he began his recovery.

 

One of my daughters, who tries so hard to fit in, also struggled in secondary school. I had many meetings with the school staff and the NEPS psychologist. I always found myself in these meetings explaining my daughter’s condition to them as they just did not get it. The more I explained, the more they tried to ‘fix’ her, which put more and more pressure on her. She ended up severely depressed, not eating or sleeping. She lost all her body weight and became anaemic and bed-ridden.    The only choice I had was to remove her from school and concentrate on her physical and mental well-being as she was becoming more and more a recluse.

 

It has taken 2 years of being at home and intensive individual programs to get her back on track.   She has enrolled in a different school and has begun her Leaving Cert cycle. Because of the work I have do with her on self-awareness, she can now advocate for herself and has a better understanding of how autism impacts on her, and also how and why she ended up not being able to go to school. She now knows that it was not her fault, but the problem was the lack of autism knowledge and understanding on the part of teaching staff and professionals who were working with her. This knowledge has helped her to move on and make informed decisions for herself and her education.

 

My other daughter, also in secondary school, is struggling and has done so since she began secondary school. Last year she had several panic attacks which resulted in her soiling herself, due to her anxieties and the whole school experience. The difficulties she faces every day cause her to miss school more and more often. Again, as in my other daughter’s case, I have tried on several occasions to address my concerns in meetings with the school, but it has fallen upon deaf ears again. I cannot seem to get any reasonable response to acknowledge this concern, as my children do not present as autistic because of the work I have done with them. It’s as though they disbelieve me, and I have been accused on several occasions by teachers and other professionals that it is my own anxieties which are causing my children’s difficulties.

 

I have two other children in primary school, who are also struggling. They were the only members of my family to receive early autism-specific intervention, which enabled them to attend mainstream school. One of them also has epilepsy, which is brought on by anxiety and stress. She only has seizures when she is attending school. I have had great difficulty engaging with her school, again due to the lack of knowledge and understanding about autism. She too is missing a lot of school due to her anxiety. One major concern I have is for her safety, as she doesn’t feel pain and has come home injured from school, injuries that weren’t attended to as my daughter didn’t inform a teacher, due to her difficulties with feeling pain and her anxieties around communicating her needs to others. When I try to engage with her teachers, I am met with defensive correspondence stating that they have years of experience and that my daughter’s care needs will be met, which they clearly haven’t been.

 

Her brother has major difficulties in verbal understanding and processing. During school term he becomes extremely anxious and has difficulty sleeping – he ends up also missing school. The school is of the belief, and have stated on many occasions, that his difficulties are due to lack of attendance. Even though they have clearly stated what his difficulties are, he has not received visual supports or any form of support other than sensory breaks.

 

The schools appear to have very little information, knowledge or understanding about autism and how it impacts the individual – they do not realise that every person on the autism spectrum are unique. Because my children do not present as difficult or present with challenging ‘behaviours’, the schools do not accept my concerns or my knowledge. Because I know how to manage and support them by doing a lot of the work with them at home, by giving them a break from the pressure of school to prevent them exploding or acting out, they do not receive the support or the understanding they clearly need.

 

This lack of understanding does not just affect schools, it also effects the professionals who are involved in providing services. My youngest son has been attending a service provider since he was a few months old, as he has Soto syndrome (a rare genetic condition). While attending this service, I feel I have suffered harassment by the social worker, by her very personal questions regarding the other members of my family. I believe they think I am neglecting my children because they are out of school, which is clearly not the case – school is the place that is neglecting my children. Again, this is lack of autism knowledge and understanding.

 

This type of pressure is causing unwanted stress to my me and my family. What I really need from them is their understanding and support and a placement for my youngest son in early appropriate intervention so that he will enabled to be school-ready. I believe he may also be on the autistic spectrum along with his other difficulties, so I am well aware that placing him in a mainstream environment could be detrimental to him, and would be extremely difficult for the teaching staff and the other students. When he has had an assessment, I have to show them how to engage with my son because the way they were assessing him was causing behaviours that up until then he had not displayed. Again, this I believe is due to their lack of understanding and training.

 

It is a constant struggle for me between supporting my children, acknowledging and advocating their difficulties and at the same time being disrespected for my knowledge, or misunderstood by the professional world, many, many times in order to protect them. What am I to do – compromise their needs? As I have pointed out, that is causing them mental and emotional damage, and has resulted in two of my children contemplating taking their own lives. Or do I continue to find the strength to fight a system that clearly does not understand autism and how it impacts each individual in our education system? It’s time that the policymakers and the officials in the Dept. of Health and Education listen to and collaborate with the people on the autism spectrum and their families, to make our education work better for all autistic people in Ireland today.

I am a mother, daughter, sister, partner, homemaker, friend, carer, citizen, voter, teacher, mentor and coach. I have lived with autism all my life but did not know this until I was in my 30’s – I get autism.

1 COMMENT

  1. Usually medical teams would tell u really high risk if previous child had Autism . Good odds etc.
    The fact she had 6 may mean this lady was in early 1900 s with no contraception etc.

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