The Biggest Difference Facing Families Affected By Autism

I have seen so much on social media recently about the differences affecting autistic people, from their traits, their treatment, their support, and access to suitable education. The great divide between those who have loved ones with ‘severe’ autism often accompanied by challenging behaviour, significant communication difficulties and learning difficulties and those whose loved ones have one foot in the non autistic world and one foot in the autistic world, often feeling the need to mimic and mask risking their mental health.

Which of these groups need the most support and how they access that support seems to be a whole area of debate.

As a parent to one child whose difficulties are very obvious and another child whose difficulties are perhaps initially more difficult to spot I read with interest what other families in my country and further afield are experiencing.

In doing so I have came to this conclusion: The biggest difference facing families affected by autism isn’t actually how you experience life with autism but actually WHERE YOU LIVE.

Location matters, even more so when it comes to experiences with autism.

Despite national policies and laws on autism things are very different in different areas. Everything from your educational experience and support, access to CAMHS (child and adolescent mental health services), OT (occupational therapy) support for sensory issues and fine and gross motor skill development, support groups for families, access to speech and language, and respite vary from one part of the country to another.

This results in families feeling cheated, jealous, angry and frustrated as they hear of other children or adults getting support that they need just as much, sometimes more, yet can not get.

The geographical disparity across the country, often referred to as the postcode lottery, is failing families, failing autistics and failing professionals who are fighting for funding to provide a service they are trained and equipped to provide yet restricted by lack of funds and investment.

I asked a few families about their experiences of services and professional support throughout the country and here are a few comments. (Names and locations all hidden for protection)

With the exception of an initial visit from the Educational Psychologist as part of the initial diagnosis process, we have been denied all services at some point over the years. Even when sight loss occurred because of anxiety no services were offered.”

I have had a good service compared to many others. Had access to speech therapy although after cuts had to contact head of service and MP (member of parliament) to chase for more which was then granted. Seen OT but had to go private to see specialist that can actually offer help. Not needed camhs but hear its a nightmare to get. Directed to parent support groups for autism and given pre school support from asd service. I have parents in the same nursery as my child that fall under these LAs(local authorities) that have to fight every step.”

“We have a NAS (national autistic society) support group which have been a godsend. Plus the school my child is at puts on workshops which have proved really interesting. We were told speech therapy would continue in school but it hasn’t . They’ve had no speech therapists. One started in January so I’m hoping that means he’ll have access now.”

We were denied occupational therapy even though we’ve applied 3 times with other professionals recommendations.”

We were refused any support from wheelchair services due to not meeting their requirements for a government funded special needs buggy, despite our doctor asking them to reconsider. Their reasons were because his joints don’t dislocate and that he isn’t medicated daily. Obviously this didn’t help us in getting my 6 year old Autistic son, who struggles with pain from hypermobility, to and from school every day. Luckily for us, the parents at our sons school held a fundraiser and raised enough money for us to buy one ourselves.”

We have been denied any form of dealings with CAMHS even though my son kept threatening to kill himself at 8 years old. Not a severe enough case apparently.”

“Speech therapy; not denied but rubbish and one SALT left my house saying she couldn’t help my non verbal 4 year old!! Thankfully he gets a better provision via SEN school now. Occupational therapy – this is NOT commissioned when there is an Autism Diagnosis in my area.. We have gone private for assessments and reports. The only local authority OT we saw was the Disabled Children’s Team one regarding home adaptions. CAMHS – Had to fight for this but once ‘in’ with CAMHS Intellectual Disability they were helpful. Educational Phycologist – Assessed when my Son was 2 & refuses to re-assess now he’s 6. My area regularly breaches national guidelines on everything and services are so stretched it’s a fight to get anything!”

All these families have children with an autism diagnosis, all these children require support, yet the ability to access that support varies on something as fundamental as your location.

Could you imagine if the same geographical disparity happened with other health issues? Imagine you broke your arm in a fall and had to go to hospital for treatment. Would you not expect that treatment to be almost identical throughout the country, following a proven and approved pathway of treatment and follow up? Of course waiting times may vary depending on the time of day, weather conditions, how busy the hospital is and so on but basics such as an X-ray and painkillers should be standard wherever you went.

Most broken bones mend within six to 8 weeks. Autism is a life long condition yet diagnosis, support, education and life experience all vary not necessarily due to the individual uniqueness of each person but due simply to your postcode.

One non verbal five year old may have access to speech therapy, respite, have one to one support in a fantastic school and have free access to clubs to enhance his social experiences whilst elsewhere that same child could be left to struggle in mainstream with no access to speech therapy, no support for his or her family and not even an annual paediatrician check up.

The reasons why this happens may be complex and take time to change but that does not mean we should accept it as normal.

I feel blessed that on the whole my children have the educational support they require, my son can access some respite, my daughter has received the necessary eating disorder diagnosis so that everyone understands her, and I am aware of some amazing support groups nearby.

It breaks my heart when I think that the difference between what I have experienced and what other families in the UK experience is all down to one thing: where you live.

Isn’t it high time we addressed this and stopped failing so many autistic children, young people and adults so that everyone has equal opportunities to be the best that they can be?

10 thoughts on “The Biggest Difference Facing Families Affected By Autism

  1. Sadly, the same is true of many other conditions. Perhaps not broken arms and the like, but mental health in general, support for adopted/LAC, cancer, IVF, operations and so on. I’m in no way downplaying the issues you or others you’ve polled face, but it’s a common reflection within many areas of healthcare.

    Liked by 1 person

    • Absolutely agree and in all areas it needs addressing. I focussed on autism solely as it affects me so much personally but I agree so many other health conditions have the same problem. It’s about time it was addressed.

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  2. we live in the unites states and have two sons with autism. 11 and 13. we have had to pay for virtually ALL therapies out of pocket. we live in an affluent part of the country and my husband has a solid job in terms of income. we have a “good” insurance plan. the word Autism seems to scare insurance companies away and subsequently, families fall into debt. ie: we needed an ABA in home therapist and when I called all of the ABA programs ‘offered” through our insurance, NONE of the calls I made got a call back except for 1, and they only work out of network with our insurance company. also, we have a nutritionist who works with my son with celiac and in order for her to work with insurance company she “plays their game.” When she sends in claims for our appointments, she doesn’t use the word Autism. She uses the word “obese.” (my son is slightly overweight due to internal inflammation from celiac disease). Insurance pays 100% with the word obese. 0% is coverage for Autism. I’ve stopped getting angry at examples of this nature when it comes to insurance not supporting our family. I’m exhausted fighting the battle. We want our children to get the best care and that means we have to sacrifice being debt free.

    Liked by 2 people

    • This is so heartbreaking. Here in the UK we have an amazing National Heath Service but some services are not provided and need paid for privately. It’s awful to hear of families like yours living under so much financial pressure just trying to provide what your children need.
      Thanks for reading and commenting. I love hearing from you.

      Liked by 1 person

  3. We’re in the US and we are lucky that Ben gets speech and OT through his school. Not all schools offer the same though. He was in an autism classroom in a mainstream school until he was 9yrs old. He was finally moved to a private autism school after our school district exhausted all they could do. They pay his tuition at the private school. But again, not all school districts are the same. It very much depends on where you live.
    He gets state funded insurance that covers all his medical but we haven’t been able to get any at home services. So he’s got some services but as a family we could use more help.

    Liked by 1 person

  4. I am a retired elementary educator in the United States and taught in a school where many services were offered through the district – ABA, speech and language therapy, music therapy, OT, PT. I was not aware until recently that families of children with autism often need so many additional services which are not typically covered by insurance. Talking to parents about how they get funding or help was a very eye opening experience. Those of us who do not have children on the spectrum really have no idea about the monetary implications of having a child with autism.

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  5. Unfortunately this is true for a lot of conditions sadly. Thankfully when i was growing up, my parents had the help of a fantastic social worker due to my blindness, but i was lucky. Many children still don’t have the necessary support they need. I am a trustee of a charity which is trying to bridge this gap for parents of blind and partially sighted children but many families aren’t told of the services out there. This is very sad and really a disgrace in 2019 😦

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  6. Thank you so much for writing this. I wish I had had the time to write something just like this. I am autistic and have a son aged 16 years, with severe autism, LD, epilepsy and ADHD, and I agree completely with you have said.

    Liked by 1 person

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