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, because it was, felt that my child was

getting support through those [00:05:00]

sessions because they included art therapy and things like that

But once my child had the

sessions with cams, when those sessions were taking place when the

EHCP needs assessment was taking place. I funded some tutoring for my

child. At the beginning of the year, for a few months in.

There was the tutor's

observations of her behavior, how my child liked to learn, those kind

of things. We were able then to draw on those different perspectives

and we did do that quite quickly. We've done that over the last year.

So going from a place of probably the person you're talking about,

that there's no evidence, how can I do an EHCP to actually finding

those different

Natalie

Tealdi: can pull together

things, can't you? I know that

I've done in the past I've kept a diary with dates of what's been

going on at home, and that can be used as evidence as well. And if

you are having meetings with the school. There's minutes taken from

these meetings and you can request those and use those as evidence as

well.

So it all helps build up a

picture.

Victoria

Bennion: Yeah, that's such good [00:06:00]

ideas.

You need to do everything you

can to evidence what's going on.

Natalie

Tealdi: Yeah, exactly. It's not just, oh, well they're

fine when they're at school and they're not at home. And that's the

end of it. It's up to us, isn't it? To dig deeper.

Victoria

Bennion: yes it is I would say I don't think it can hurt

to have. Opinions of different professionals. So if you're seeing a

behavioral nurse, if

Natalie

Tealdi: yeah,

Victoria

Bennion: you've got those professionals involved at

meetings, at school, their opinions, they all count. Social workers,

anything, it can just help form a picture.

But those that have to make

the decision,

Natalie

Tealdi: And for anyone who's just stuck at home, it's

chasing up the council,

Victoria

Bennion: yes.

Natalie

Tealdi: your MP involved if it's really not moving.

what's really worked for us,

isn't it?

Victoria

Bennion: Yeah we've been really lucky, but getting the MPS

involved was really helpful. . I know something we've talked about

before, but if you are applying for an HCP and a parental one all

through the school, it's really a [00:07:00]

good idea to know those dates.

They give you the outline of

the dates that they will get things back to you.

Mark it in your calendar and

don't be afraid to chase up. You don't have to chase up horribly if

you're worried, but just inquire and it puts your child back on their

radar. In my experience, they tend to check and give you an update.

There might be particular days

that the provisional leaders working. You can note that and try to

email on those days,

But drive the process as much

as you can.

Natalie

Tealdi: Yeah.

Victoria

Bennion: In my experience, that certainly helps.

Natalie

Tealdi: another thing that's come up for us is I am

starting the process with my youngest. To see if we need an

assessment. So we're right at the early stages there, but we're

seeing some behaviors that I think are a bit concerning. But I've

been told that the criteria now for putting them forward for

assessment is much stricter than it was.

And the reason I was given was

because there are so many people waiting. So they've made it

[00:08:00] stricter,

Victoria

Bennion: Well,

that makes sense.

Natalie

Tealdi: which really wound me up because. Obviously

There's more people that are being recognized as struggling and so

they're gonna make it harder for them to get support. I don't think

that's quite the right way round

here.

Victoria

Bennion: No, it really doesn't sound the right way round,

does it?

Natalie

Tealdi: No, not at all. So I'll report back.

Victoria

Bennion: Yeah. Let us know how that's going. I do

sometimes wonder if the worse a child is suffering, the quicker

Natalie

Tealdi: Yeah,

I think, the ones that hold it

in and seem to be coping okay, seem to get missed more because

they're not causing problems

Victoria

Bennion: Yeah, certainly

for one of my children who

held it in, it was only until they weren't holding it in anymore,

couldn't hold it in anymore, that everything kicked off and. I do

wonder with my other child if it's when they stopped attending school

and you've got that absence, building up that it's [00:09:00]

absolutely can't cope.

Explosion. It's such a shame

that children have to get to that point where they're in such a

state. You think of the damage that's already been done before they

get to that point

Natalie

Tealdi: It shouldn't be that way.

Victoria

Bennion: It comes back to the campaigns for early

screenings, for early support,

and what you are just talking

about is the opposite

really.

Natalie

Tealdi: Yeah, I know, and, because as a parent, you're so

aware of the waiting list being so long that I'm quite aware. I don't

wanna get to the point, not that I'm saying we will, but if we did

get to that point where burnout happened or major mental breakdown,

you then have to go on to the beginning of that waiting list to get a

diagnosis, which just takes so long.

Victoria

Bennion: The waiting list for the pediatricians was 18

months to four years,

only a year ago. However, ,

there's more than one way. There's the right to choose. And if you

are under cams and Cams feel you need an assessment. They have their

own [00:10:00] NDAC team

that they can refer a child

to, and they will carry out the assessments and it was a much shorter

waiting list I think the waiting list at CAMS was around six months.

Then once you have your

appointments, I don't know how yours were with your child, but they

were much closer together, so it was a much shorter period of time.

So with my youngest child, who was the first one to go through the

process, the appointments took, it was from the November to the May.

There were appointments taking

place, and with my second child, it was maybe a couple of months.

So that's another thing for

parents and carers to consider. The other

routes.

Natalie

Tealdi: Yeah.

Victoria

Bennion: I've also heard of people going for a private

assessment and I know there's difficulties in this. So one of my

friends, her child. Needed an assessment for A DHD ' cause she needs

the support now.

She joined the list. And

again, it was a huge list and they didn't feel that they had the time

[00:11:00] to wait with the amount that

this child was struggling to attend school.

She needed support put in

place at school, which they found it hard to fight for without the

diagnosis. So they paid to go privately. They were lucky that they

could afford to do that, and that diagnosis helped get the support at

school and the accommodations that this child needed to be able to

attend.

What it didn't do, and you may

know this is

Medication can't be

prescribed, so that's just crazy to me. I don't understand that.

Natalie

Tealdi: I don't understand And usually they're the same

doctors that work privately as well as for the NHS.

So I really, it doesn't make

any sense

to

Victoria

Bennion: It doesn't, my friend was saying that her child

still has to stay on the waiting list for an A DHD assessment at the

hospital

So that she will be able to

get the medication she needs. Which just doubles up their...