#49 | Autism Diagnosis: A Two-Year Wait, Unless You Can Pay

Some families are now facing a two-year minimum wait just to be assessed for autism. Around 295,000 people are on the waiting list in England. A private clinic can do it in weeks, if you can pay.
Gaz and Andy start with the "golden ticket" debate. The diagnosis opens the door to support, so what happens to the families who cannot afford to skip the queue? Andy remembers the first time he filled in the benefits form for Lydia, writing down her worst day when every instinct as a parent was to build her up. Andy asks how often a private assessment ever says no, and Gaz looks it up while they record. Nobody is tracking it.
Then school. A new study links exclusion to worse mental health later on, and there is a big difference between a child who won't behave and a child who can't cope. Two hundred million pounds of new teacher training sounds good, but knowing what autism is and knowing what to do when a child will not walk into the classroom are two very different things. Andy says something he never expected to say: he feels lucky that Lydia's needs are so profound, because the children in between are the ones still fighting to be believed.
Along the way: feeling politically homeless as SEND parents, the petition that went past 100,000, and a fear only an autism parent would have. Not what is causing the power cut, but how you get your child through it. Gaz rings home in the middle of recording to sort it.
And the National Autistic Society now says autism is genetic. So why do so many of us still lie awake asking whether it was something we did?
Timestamps
00:00 Cold open
00:13 Intro
00:22 A week that flew by
01:13 A two-year minimum wait for an autism assessment
02:02 295,000 people on the waiting list
03:12 The diagnosis as a "golden ticket"
05:13 The form that makes you describe your child's worst day
07:11 Private diagnosis: how often does it say no?
09:03 Does money buy a faster route to support?
10:19 "She's fine at school. It's at home she isn't."
12:07 School exclusion: won't behave, or can't cope?
14:34 "Would you mind not bringing your child in today?"
16:20 £200 million for SEND teacher training
19:30 "I feel lucky her needs are so profound"
22:33 The teenager nobody believes
23:45 Politically homeless
27:39 What a real SEND policy would look like
34:33 The petition that went past 100,000
41:31 Stockpiling, and a power cut with an autistic child
45:39 Gaz rings home mid-episode
48:02 The National Autistic Society says autism is genetic
50:50 "Was it something we did?"
52:34 UK, US, Australia: everyone is waiting
53:29 Mailing list, guests, the studio and the Discord
55:25 The Oxford Half Marathon, and the fundraiser we forgot
Gaz and Andy are two dads raising autistic children, talking about the bits nobody else says out loud.
Everything we do is in the link tree in our bio.