10/02/2026
The failing system.
The autism world seems to be exploding right now. By that I mean it is at breaking point. For all concerned.
As we know it today autism is a āspectrumā - meaning a wide range of the way brains can develop and see the world. Itās not a straight line, or mild to severe it is known as a mix of traits that can be more or less intensive for some people.
Autism has been around as long as humans have, most likely having some very old fashioned and out dated names. In the 1800s to early 1900s people like my Walt were being institutionalised for their āintensityā of autism.
It wasnāt until 1911 when the word autism was introduced- and then it meant āa feature of schizophrenia- not a spectrum like today.
Shortly after that in the 1940s hans Asperger came along and started to describe different groups of autistic children as āAspergerāsā and these were thought of as separate conditions.
Fast forward to 1981 and the term autism spectrum is born.
The autism spectrum is made up of several different categories. Things like communication, sensory processing , motor skills, social awareness, perspective and repetitive behaviours. In each category you might struggle with everything or only one thing. If you struggle with everything across all categories then you need more support if you struggle with less over one or two categories you might need less support.
This is where the line blurs and therefore so does the support, the understanding and frankly parents and children are left to struggle every single day because of it.
I understand the spectrum - I understand why it was created this way because there is ALOT to unpack when it comes to
Autism but the suggestion that itās a spectrum really impacts on the support that parents and children get and makes it so hard for the world, our government, nhs and people around us to understand.
For some people autism might mean they have sensitivities to light and sound and so they wear ear defenders because this might cause them to be overstimulated and eventually have a melt down. That person may still be able to function, get ready, get washed, use the toilet, understand and follow basic instructions, understand they canāt walk out in-front of a car, talk to you, read and write. But if theyāve sensitivity to light and sound and they also display repetitive behaviours as well as donāt pick up on social norms- they would be diagnosed as autistic.
The fact that someone like Walt who canāt do all of the above and will need life long care can be compared to someone who just ticks a few boxes on the spectrum actually blows my mind.
So a Walt and this other person - letās call him Joe bloggs, would get the same support from our government.
They would get the same DLA benefits, the same school support and the same diagnosis. Whereas you can see Walt needs a lot more support than a Joe bloggs.
This is across the board. So schools for example we had to fight tooth and nail to get into Waltās autism specialist school- thatās because it was out of area and we were told it was āfullā however the school told me that they even had kids in the school who didnāt need to be there/ they were referring to Joe bloggs who can read and write and sit at a desk and take instructions. When I was fighting we were told lots of lies by the local authority on both Sunderland and Durham side. Things to try and stop us fighting and fob us off. One of the main things I was told was - all the children who have a EHCP, will get sorted out into high need to low need and thatās who gets the school place and itās not first come first serve. Walt was put at the bottom of the pile because he was out of area and his file was never taken to the head teacher. This infuriated our judge in court so much so that he asked us to step out of the room while he told the Local authority off. It was actually embarrassing. When I was told this āprocessā I asked them - ok so who puts the ehcps into a high need and low need pile? Who the sits and decides Joe Bloggs is less need than Walt? Because in Joe vs Walt itās clear as day. But what about a Walt vs a Walt. Who gets the place? Who is sat at a desk making that decision. Because thatās my childās life in your hands and I donāt think thereās a high enough paid job in the council that has that role. Surprise I was never given a name to this magical person who ādecidesā
There is no doubt in my mind that some kids probably could cope with mainstream as long as they are supported in the right way. A Joe Bloggs for example could thrive if he understands instructions and can read and write. He might need help making friends and wearing his defenders / altered lighting and access to a break from class where he might struggle but he can probably mix. Walt obviously needs the 1-2-1 intervention. He needs support with every single aspect of his day. If thereās an activity the teacher will hold Waltās hand and guide his hand to do the activity- for example painting or hand prints - he wonāt dip his own hand or press it down or underhand why they are even doing the activity. His melt downs can come any second of the day and its0-100mph he doesnāt just need access to break rooms but sensory rooms, occupational therapy, speech and language and someone to help with the toilet and self care.
The government says itās drowning in kids needing support but what it really needs is a better diagnosis system. Where the higher need get the higher support.
Walt was diagnosed after a lengthy process at 3 years old and all we got was a phone call to say yes heās autistic and that thereās an info pack coming in the post. The info pack horrifyingly affects me still today. It was huge -āoverwhelming and upsetting. Started with playgroups and places that did quiet hours. Ended with group homes and respite centres where I could ship Walt off to if it becomes too hard.
Walts only 7 and he gets high support but thatās because I have basically dedicated my life to fighting for that support- and my heart goes out to those with a Joe Bloggs who does still need support but your fight must be so so so hard because itās not blatantly obvious like it is for Walt. I still had to fight and you can see within spending a minute with Walt. If your child can read and write and talk i dread to think how big of a fight youāre looking at for support and diagnosis.
We need health professionals to be able to say this person is high need. Heās going to need x y z in school and x y z in adulthood. Itās like the blind leading the blind in the real world.
Plus everyoneās experience of autism is different so your nurse at hospital might have only seen a Joe Bloggs and when she hears oh Waltās coming in he has autism she thinks oh right a Joe is coming in so il give him a book to read. Well no. You canāt do that because they are worlds apart. Thatās one of the worst parts because some hospitals have been so good at understanding but others think they can plonk you into a sensory room and magically your autism will be fine and youāll be fine getting your blood taken / well nope it doesnāt work like that either.
What got me thinking about all this was the story in the news in Australia last week. Two parents kill their two autistic kids and then themselves in a su***de pact. Unfortunately not the first time Iāve read this story. Lots of people do this. First feeling is outrage and sadness/ how could they do that to their kids. Turns out their support had been taken away and they couldnāt cope. No money no support and they felt this was their only option. They loved them so much they didnāt want them to face the world without them in it. You read the article it goes on to say parents were lovely - both of them hanging by a thread. Which tells me people knew and didnāt help. This is what it boils down too. Those parents Probably fought hard to get the support just as I did for Walt - you get a little help and for us itās school. I never thought we would get there but it gives me peace of mind knowing heās there heās happy and heās with other Waltās. If the support was taken away now I donāt know what Iād do. Walt is only 7 but heās hard work, he has complex health needs and autism needs. I am still fighting for help everyday- and thatās not take Walt away itās just help me with things that will help calm him or help him to communicate. I have to fight for help for myself because mentally itās exhausting- since Walt was born 7 years ago Iāve been told to section him 3 times, to send him to a respite centre for a few nights a week to send him away every weekend. I canāt do that. Some parents can. I canāt. But also why is that the only solution to these people, why canāt they get you support as a human being - what exactly about being sectioned is going to help me or my son?!!
The couple in Australia had two boys, and they were both teens so theyāve been in this fight double what we have. Many of the comments are blasting the parents for what they did but a lot of them have no idea what people have to cope with- and Iām
Not saying they did the right thing- itās awful but I can say I understand - no one can love your child like you do and special needs is a different ball game. If I thought Walt wouldāve been worse without me in this world then yes id take him with me. This world is terrifying with me in it fighting for his every right and every word. I often say I need to live just one more day than Walt does and this is why. So no I donāt agree with these parents but I do have compassion and understanding and I hope to god I am never in their position.
Walt hits me when heās in distress and heās only getting bigger- Iāve seen stories of similar things happening to parents who get beaten up trying to provide basic care to their child- imagine living that life and then someone comes along and takes your support away. Iām not sure id be able to see another way out either. The fact is Australia and the world should be ashamed that these two parents felt that was the only way. Theyāre only option and theyāve been beaten down and lived a hard hard life for years to get to that place. That choice and now thereās no going back.
Support needs the different levels of a diagnosis to be able to put the right support in place. They canāt just work off āspectrumā where there isnāt a line of severe vs mild. We need it desperately or these things will keep happening. It only February now and two of you have told me your child didnāt get into specialist school because thereās no spaces - youāve been told theyāll have to go mainstream and cope - both of you have a Walt and both of you know you canāt. The LA then tried to make you sign on the dotted line to say Youl home school! Luckily your part of this community and have support and will fight but how many parents are there who donāt know who donāt fight or who trust the Local authority to do whatās best.
Well all I can say to parents out there is that weāre all winging it because none of us has had to deal with this until your first autism kiddo comes along but please donāt give up the fight, donāt trust their word because honestly itās down to money and your child deserves better. Fight fight fight for it because you deserve better. If homeschool is your thing great but donāt sign up for that unless your committed because to them itās a tick box situation and if your homeschooled then your fine- but mostly we know thatās not going to be fine and your child deserves a right to education.
To the Government- council or local authority - please god be the change that the autism community so desperately need itās not 1800 anymore and weāve come a long way since then. We have so much to still to see. The support package for a Walt needs to be better because right now the goody bag at an awards ceremony is more supportive than the what we get. Parents are ill trying to survive this. Mentally and physically ill. Be the support that you would want your own child to have. Donāt just advertise autism friendly or sen play places be the change we all so desperately need itās 2026 now and we need things to change- less articles like this and more support! š
š“ Australian couple āfelt they had no other choiceā after being beaten down by the system
Read the full story below šļø
https://www.telegraph.co.uk/world-news/2026/02/03/parents-perth-kill-autistic-children-pets-murder-su***de/?WT.mc_id=tmgoff_fb_photo_autistic-children-pets-murder-su***de/
