A Letter to the Editor

My name is Emma. I am the mother of a wonderful, intelligent, caring and imaginative 14-year-old boy who happens to have Aspergers and Pathological demand avoidance. Both conditions that fall under the umbrella of the Autistic spectrum disorder.

I am writing this today in sheer frustration, anger and disappointment after learning that Welsh Labour have voted against the Autism Bill for Wales.

Let me tell you a little about our Autism Journey and then maybe you can understand the utter despair I feel that the very people who are supposed to be the voice of their constituents have voted against protecting and supporting the rights of my wonderful child and the thousands of others just like him who are languishing thanks to a total lack of understanding and support.

My son is amazing, he is imaginative, intelligent, creative. He has an unimaginable ability to absorb information. He is also suffering from severe anxiety, he self-harms and struggles with suicidal thoughts. He has been failed. Miserably. On numerous occasions by both health and education.

It took 7 years of battling, numerous repeat paediatric referrals, formal complaints, a mis-diagnosis, a complete mental breakdown, a phone call to the Head of child health services as well as support from both the Children’s Commissioner for Wales and Nia Griffiths MP and a trip to Withybush Hospital to eventually get him diagnosed.

I have had to fight, and fight hard for every iota of help or support that my son has ever received. I fought for his statement of educational needs, I fought to enforce his statement when school wasn’t adhering to it. I fought to get him an appropriate Comprehensive School placement.

We were refused a unit placement as he only received his diagnosis in year 6 of Primary School and there were no places available. His first week in mainstream, his nurture group teacher called to ask me why he wasn’t in a special placement.

You couldn’t make it up. Within 3 months of starting Comprehensive School he had broken down again and the decision was made to move him to the unit as the staff couldn’t manage him or guarantee his safety.

All these changes had a massive impact on him and have left him so anxious that he has not been able to attend school for almost two years. He self-harms and has attempted suicide on numerous occasions.

It has taken 16 months and the help of the Children’s Commissioner for Wales to secure a tutor for him so that he can access an education at home and work towards his GCSE’s. In total, through lack of proper support he has lost around 3 years of education.

I now find myself in a situation where I am caring for him 24/7 along with his two younger siblings. I run a small business from home thankfully as had I been employed, I would have had to give up work.

I have no break from him, he has complex needs which need addressing both day and night, I have no respite. No help. No support. I recently requested an assessment of needs for him in the hope of getting some support after being turned down by the Children’s Disability Team as he does not fit criteria. A key worker came out and informed me that we do not score enough points to qualify for direct payments which would enable me to employ somebody to take him out, let him explore and discover new things, without being constantly attached to his mother.

He’s 14, he needs independence and to discover new interests, to build on his social skills and to explore the world like a normal teenager, not exclusively in the company if his mother.

I was however assured that there had been changes made and services were more accessible now without the need to be under the CDT. It was identified that he would benefit from a mentoring service. The referral was put in, it was again refused as he did not fit criteria. Our case was closed.

These are the improved services of which Lee Waters AM talks. In my opinion they are no different, no better. They are discriminatory and not fit for purpose. They do not reach the people whom so desperately need them.

It shouldn’t have to be like this. I shouldn’t have to be told by a teacher that all my son needed was to “be kept in a room on his own so that they could break him”. He shouldn’t have had 5 CAMHS referrals refused “because he’s autistic”.

I shouldn’t have to watch my child utterly broken and have nowhere to turn for help or support. If an adult had the kind of emotional breakdown that my son had on numerous occasions, they would be seen by the mental health crisis team immediately. Because he is a child there is absolutely no support available to him and this is not acceptable.

Autism has had a massive impact not only in my son, but on me and his siblings. My mental health has suffered under the strain of caring for him unsupported leading to me needing medication for a time. His siblings cannot live normal lives, I cannot just pop to the park with them, they cannot have friends over to play.

Any days out we have to be planned with military precision and a family member needs to be there to help with his siblings as his needs are so great he needs constant one to one support. The guilt I carry for how much of their childhood his siblings are missing out on is unmeasurable. Autism affects the whole family, it is isolating, frustrating and relentless.

I for one am sick of people who have absolutely no comprehension of the challenges, battles and desperation autistic people and their families face thinking that they speak for us. I am sick of empty promises, I am sick of platitudes and I am sick of copy and paste responses when faced with questions about their decision to vote down the very thing we need to make a difference.

Autism is a spectrum disorder, it comes under an umbrella with many other neurodevelopmental conditions. To see excuses such as “the professionals” disagree with the bill and “funding is better placed to help those who’s needs are identified” is infuriating, why? Because the vast majority of those without diagnosis cannot get anywhere near any of the professionals listed.

The frontline health workers and teaching staff are neither trained nor qualified to identify autism so therefore refer to paediatrics. The paediatric waiting list is phenomenal and through all this, it is essentially the autistic person who is suffering whilst health and education pass the buck back and fore.

To say that I feel let down is a massive understatement. The amount of times I have been told that my son “does not fit criteria” or that we can’t access support “because he doesn’t have a diagnosis” is ridiculous. To then hear our elected official essentially dismiss us by insisting that needs can be met without diagnosis and that my son does not need to have his rights legally outlined as there are services in place to support autistic people is a kick in the teeth.

Please believe me when I tell you, as someone who has lived and continues to live the autism rollercoaster, as someone who has been in the depths of despair, who has watched helpless as my little boy has been broken and shattered by a fatally flawed system, there is absolutely a need for an Autism Act for Wales.

Thank you for taking the time to read my thoughts on this,

Emma Daniels.