In this week's episode of The Autism Mums Podcast, we discuss the challenges faced by parents navigating the waiting period for their child's autism diagnosis. We explore strategies for gathering evidence, advocating for support, and managing the differences in behaviour between home and school settings. With practical tips and personal insights, we aim to empower parents to take proactive steps during this often frustrating and isolating time.

Key Takeaways

Understanding the Waiting Game: Many parents face the challenge of navigating the waiting period for their child's autism diagnosis, often feeling isolated and unsure of the next steps.

Coping at Home vs. School: Children may present differently at school compared to home, leading to discrepancies in support. It’s vital to gather evidence of behaviours at home to advocate effectively.

Gathering Evidence: Documenting your child's struggles through video recordings or diaries can provide crucial evidence when communicating with schools and professionals.

Utilising School Resources: Engage with schools to explore options like re-engagement sessions, youth workers, or alternative therapies that can provide support and evidence for assessments.

Professional Input Matters: Involving various professionals—such as therapists, tutors, and behavioural nurses—can strengthen your case for support and diagnosis by offering diverse perspectives on your child's needs.

Stay Proactive: Regularly follow up with schools and professionals regarding assessments, and don’t hesitate to reach out to your MP if you encounter significant delays in the process.

Explore Alternative Routes: Consider different pathways for assessments, such as CAMHS or private assessments, which may have shorter waiting times compared to traditional routes.

Community Support: Connecting with other parents and support groups can provide invaluable advice and encouragement during the challenging waiting period.

Self-Care for Parents: Acknowledge the emotional toll that waiting for a diagnosis can take, and we really recommend prioritising self-care to maintain your well-being while advocating for your child.

Resource Recommendations: Explore recommended books and resources that can provide further insight and support for navigating autism-related challenges.

Mentioned in This Episode

The Explosive Child by Ross Greene

Raising The SEN-Betweeners by Lisa Lloyd

Aspergers Syndrome by Tony Attwood

The Girl with the Curly Hair by Alis Rowe

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Transcript

Navigating the Waiting Game: Essential Tips for Parents of Kids with Autism

Natalie Tealdi: [00:00:00 ] in this episode, we discuss the challenges faced by parents navigating the waiting period for their child's autism diagnosis. We explore

strategies for gathering evidence, advocating for support, and

managing the differences in behavior between home and school

settings.

Practical tips and personal

insights. We want parents to know that we get how frustrating and

isolating this time can be. It really can be so hard, but there are

things you can do to feel more empowered, and we are going to share

some of this with you today.

Victoria

Bennion: That's right. And we really hope it makes a

difference to you.

Natalie

Tealdi: So I've had a few conversations this week with

parents who have children who are in that in-between stage where

they're waiting for a diagnosis and , they're not attending school

and they're stuck. They have no support and they're not really sure

what to do. And I think that's one of the hardest.

Parts. One of the families the

child is at school and seemingly coping at school, but [00:01:00 ]

at home really not coping at all. And then there seems to be a

barrier of support there because there's no diagnosis. And then

another has been off school for, I think it was two years

Victoria

Bennion: Two.

Natalie

Tealdi: Yeah. And then waiting for a specialist placement,

denied one and then left

Victoria

Bennion: What?

Natalie

Tealdi: I know with the parent not really knowing what to

do. So I thought it might be helpful to talk around what you can do

in those situations

so we talked about eh, HCPs

and the fact that you can do a parental

one,

we've talked about before,

haven't we? And I think, but the key thing here is the evidence. So

the, stumbling block is if school aren't seeing those behaviors, if

they're masking or if they're keeping it all in, what can they do?

Victoria

Bennion: So I've spoken to people in the past where this

has been an issue. This is a really common issue,

Their approaches both of those

was to video their children when they were having meltdowns and show

the school that might be what you see, but this is what we see.

This is how they're [00:02:00 ]

struggling. And I know certainly for one of my friends, that was

really key in the school changing their perception of how the child

was coping and. Putting in extra support and supporting a diagnosis

at that point, my friend didn't have a diagnosis for a child.

Natalie

Tealdi: Right. That's a really good tip.

Victoria

Bennion: Yeah,

Natalie

Tealdi: I think when it comes to eh HCPs, it's getting the

evidence, isn't it? Wherever you can,

Victoria

Bennion: There's different ways you can do it. This did

come up, I was talking to someone this week about how do you get

evidence maybe if your child's not in school and there's nobody else

except the parent to. Observe these behaviors and these struggles,

and it caused me to reflect on what I've done.

Both of my children, it was

like a bit of an explosion and it all happened very fast. Both of

them, it was e HCPs, running alongside school difficulties and being

on the pathway to be assessed. With one of my children, she changed

schools. So this school she was currently at, they didn't know her.

They had really nothing at

that [00:03:00 ] point, she was unable to

attend school because she couldn't cope there. That was just over a

year. She was offered to go on re-engagement sessions at the school.

Sometimes some schools will put something in place, and this was at

her old school, so she felt comfortable there to attend. That gave

the new school, or at least a couple of members of staff. An

opportunity to get to know her a bit and to make their own opinion.

It did not help reengage her in school, but it did help that evidence

trail. And actually, I think it was really crucial because one of

them, when it came to going through the EHCP process. member of staff

who was in the engagement sessions talked to the educational

psychologist, and she was able to say that my child was masking

highly and she only needed to say a little bit, but it gave weights

otherwise we had nothing to show.

Something I asked for at the

time was the horse course. I'd [00:04:00 ]

heard it talked about before in the community as being a good option

if you've got a child with anxiety. I was having to have regular

meetings about my child's non-attendance. So I asked if it would be

possible for them to beep, put forward for the horse course, which

they agreed readily. That took place over a week.

Then there was a report at the

end of it, and then we had that additional evidence.

The school put in place a

youth worker who met with my child once a week. So that's another

person that's involved with your child who can have input into things

like eh, HCPs. Even the diagnosis process potentially, rather than,

again, just a parent saying, my child's struggling.

We took my child to see a

psychotherapist. So again, another professional we tried, cams were

rejected in the first instance because of the re-engagement sessions

with the school, interestingly.

The GP had to refer again once

those sessions had finished, becau