I just need some advice - possible HFA

[Anonymousmum1234]

Hi,
I know there are a lot of posts about HFA, which I’ve read quite a few!
My 4 year old is showing red flags for autism at pre-school. Doesn’t communicate with her peers (limited communicate with adults), is repetitive in her play (has to do a series of drawings before anything else each morning), fixates on one toy, had a meltdown when she went to a trip to reception class (can become very distressed when dysregulated or during changes in routine and familiarity, can become physically violent towards her peers), food has been hard (underweight), will only parallel play with peers if favourite adult is near (and they don’t talk too much), she has significant speech delay, presents as mostly non verbal at pre-school, often walks on tip toes, will wash her hands for extended amounts of time (at home it’s teeth brushing, we have to manage this).

I’ve booked a GP appointment to try and get her an autism assessment via Right To Choose. I hope she will be referred but I’m not too sure if the doctor will agree!

The thing which is bugging me is that at home she’s improved so much recently & if it wasn’t for the pre school I wouldn’t be too concerned. She plays with her brother, takes turns, she talks nearly all the time (mostly unclear). We have had issues around repetitive behaviour, sensory issues (such as food and washing) and she does have regular temper tantrums (bad) but I feel she’s got better. I just can’t understand why at pre school she is struggling so much. It’s not just at pre school if we have visitors to the house she runs/hides/wont look at them and she’s never interacted/spoke with my Dad. She interacts with her Granny though which is lovely. In other settings she’s like a different person. She had to go to hospital for a minor operation and she said one unclear word to the nurse despite the nurses best efforts.

To anyone in the know does this sound like possible HFA or something else (I was thinking selective mutism). I just want her to get the correct help/diagnosis…

thanks in advance

I forgot to add at preschool she makes very little eye contact with adults or children, but at home she makes good contact with me and her dad

Whether it is autism or not, referral for further assessment is a good idea.

Is DD under SALT? And has she previously seen a physio?

Not all ICBs commission sensory OT on the NHS, but if your area does, it is worth a referral for that too.

For the food issues, look at ARFID. Has DD seen anyone for her eating?

What support is the nursery providing? If you haven’t already, speak to the SENCO about support for reception/transition. You can request an EHCNA yourself. On their website, IPSEA has a model letter you can use.

@perpetualplatespinning

thank-you for your reply.
She’s on the SALT waiting list which is 2 years (1 year to go!) and she has been referred to and accepted by a Pediatric dietician so I’m hoping things will improve for her. I never knew you could get a sensory OT so I will mention that to the GP.
The pre-school have been brilliant, they have applied for an EHCP and we are just waiting for an assessment. We deferred entry until next September for school, her key worker was in agreement and said it would throw her going to reception this September. At least she has some extra time.

We shall see what the GP says, I’m not too sure if I will get her referred but it’s worth trying. Thanks again for your pointers 😀

What week of the EHCP process are you on? Is the LA sticking to the timescales?

If the LA has agreed to assess, during the needs assessment, the LA must seek advice from:
a) the child’s parent or the young person;
b) educational advice (usually from the head teacher or principal);
c) medical advice and information from a health care professional;
d) psychological advice and information from an educational psychologist;
e) advice and information in relation to social care;
f) advice and information from any other person the local authority thinks appropriate;
g) where the child or young person is in or beyond year 9, advice and information in relation to provision to assist the child or young person in preparation for adulthood and independent living; and
h) advice and information from any person the child’s parent or young person reasonably requests that the local authority seek advice from.

H can include things like SALT, OT, physio. You don’t need to sit on the normal waiting lists for this. If the LA has agreed to assess and you haven’t yet requested the LA seeks advice and information from these, IPSEA has a model letter you can use.

For sensory differences, you might find the book the Out of Sync Child helpful and also this booklet.

Are you in receipt of DLA for DD?

@perpetualplatespinning

Thanks again. Very helpful information 😀

Just to add to the above, most of the diagnostic criteria for autism around play/interactions with other children exclude siblings as examples. It may also be that the home environment suits her sensory needs much better and she feels safe there (e.g. always knows what will happen next, knows people will understand her) so she can show her full/best self. It's really quite common for autistic kids skills/behaviour to seem to vary wildly between environments.

Can preschool offer her a quiet space (some children like a play tent), breaks outside the classroom, ear defenders, fidget toys? A full OT assessment will tell you more about sensory needs, but it's also possible to find a few things that help via trial and error.

@BusMumsHoliday

Thank-you for taking the time to reply. Your thoughts are very helpful about her behaviour at home vs out of home. I thought autistic children were the same in all settings so that’s really interesting to know.

The Preschool do have a quiet corner but I doubt she would ever use it. It sounds to me like she spends most of her time outdoors when she is there (except when painting). One thing we’ve found is she doesn’t seem to recognise when she’s tired, her behaviour just gets really bad (lashing out etc.). When she comes back from pre school her behaviour is always really bad.

Thanks again 😀

She sounds quite a lot like my 5 year old dd who is autistic and was recently diagnosed by Caudwell Children. My dd is hyper verbal - she has unusually adult sounding speech for her age.

If you have concerns now, this will only get more of an issue if she’s attending a mainstream primary school with possibly 30 children.

Some MS schools brush the needs of able autistic children under the rug because they already have children with even higher care needs in the class.

@IShouldNotCoco

thank you for taking the time to reply. It’s handy having mums of autistic children to talk to because it’s so hard to know what’s concerning and what isn’t.

Does your DD have major differences at school to home (I.e. a lot less talking at school). As others have said here I’m thinking it could be that preschool is a bit overwhelming for her so she doesn’t talk. I did look into selective mutism but she’s seems to talk to the adults and once she stood at the front of the class and started singing loudly because she watched others do the same (usually she won’t even join/be with the other children with the group activities on the mat). This doesn’t seem to fit selective mutism to me but I could be wrong. She’s happy confident and isn’t withdrawn at all at preschool or home.

The preschool and primary school are amazing and very supportive - we are so fortunate. It’s a small class (10 pupils) but it seems to be the change in setting/routine which is causing her distress. At home she gets upset/lashes out/small amount of hand flapping if she can’t wash her dishes after each meal time! So the jump to reception class will be a big one. We’ve deferred her a year so hopefully this might help.

thanks again for your message

Kids with ASD will grow and improve just like any other kid. DS is doing a degree, working and has a group of friends, he's still autistic though and spent the weekend in a state of anxiety because he was going for a burger with them in a new place. You will probably find the happier, calmer and more confident she is in a place the less you will notice her ASD. DS is great with eye contact and then as soon as he gets anxious/stressed you immediately see it drop away.

To me everything you have said sounds exactly like ASD - besides 60-70% of those with selective mutism also have ASD. I'd also be concerned about the obsessive hand washing/teeth brushing and possible OCD - I know there's high comorbidity but don't know too much about OCD. Anxiety conditions are common with ASD though - 40% with ASD also having a diagnosed anxiety condition.

She may not recognise when she is tired, she may also not notice when she is too hot/cold, thirsty or hungry. i would always have snacks and a drink on hand after nursery and a calm, quiet time for her to decompress. Sounds like a fantastic preschool for her, ds was really lucky to have one similar. Transitions are hard though, so expect her to find the change to school difficult and exhausting.

If you don't get referred then I'd be amazed and appalled tbh.

@Sandy792you’re right but they will only grow and improve if they have parents that support and fight for them. The wrong setting and not enough support can lead to the sort of thing that happened to me - a life of mental health issues and underachievement.

@Sandy792

thank-you for your message. It’s amazing to hear your DS doing so well. You must be so proud. I didn’t realise such a high percentage with selective mutism also have ASD.

I’m now 100% sure that we are going down the right route getting her a ASD assessment. If the doctor refuses I will question it and ask for a clinical reason why not. And I can always ask for a second GP’s opinion (I have another doctor who I know is good in mind).

It’s interesting, your suggestion about after preschool, it is exactly what we do! If we don’t make her chill out her behaviour is really bad.

thanks again. Everyone has really helped me 😀

I would agree with others above that you are going down the right route. As was well put by another poster, there can be a discrepancy with how a child will behave at home and with familiar people versus other settings. Everything you have said would suggest to me (the mother of 2 high masking autistic boys and autistic myself) that you are thinking of this in the right way.

@TabsForever

thank-you for taking the time to reply. It’s definitely in her best interest to get a professional assessment. I feel a lot less worried over the differences at home/preschool now. Thanks again ☺️