My child shows HFA tendencies - what to do?

[MassDebate]

I have a 9yo DS who I think could have HFA. To give some examples:

• highly anxious and struggles with change
  
• finds it hard to focus, especially with the slightest noise/distraction
  
• can be obsessive about interests and will talk and talk about them irrespective of whether they are relevant to a conversation
  
• is extremely sensitive, and will cry at any perceived slight
  
• when upset/overwhelmed, will hide under a bed or behind a chair (in an episode recently took to hitting himself, until I saw and stopped it)
  
• extremely rules driven and can’t accept when others don’t follow them religiously
  
• some sensory issues; hates the feeling of jumpers and tucked in shirts
  
• Incredibly self critical, and hates making mistakes
  
• hates things being thrown away (will retrieve broken pens from the bin, for example) and clearing out old toys is impossible unless done without him knowing.
  

On the other hand, DS is very affectionate (loves hugs), happy to speak to adults, doing fine academically and who teachers say is popular with other children (although DS would say he has very few friends). Also good at sport and music so most would consider well rounded (but they don’t see the issues we deal with at home when it all gets too much).

Overall, DS is a lovely child, but we are increasingly worried that he is struggling with life. Does this sound like HFA or just a highly anxious, highly strung child? Is there any benefit to a diagnosis if DS is on the spectrum (apologies if that is old terminology)? Anything else we should be doing to help him? We are constantly trying positive reinforcement but it doesn’t seem to work.

Thanks in advance for any advice! (Sorry for the long post)

[MassDebate]

Thanks everyone for the incredibly helpful posts. We are fortunate enough to be able to pursue a private diagnosis if that would be easiest. Where to start though? Should we see the GP/Senco first to talk through our concerns or would that be a waste of time?

@Fatted you have described my DS’ approach to school work exactly. If he doesn’t understand immediately he would rather not try than get it wrong. Home schooling during lockdown was a real eye opener

[Loobieloo27]

My DS sounds very similar, he's 8 and is very anxious and obsessive about certain things, his teacher mentioned him seeing a SENCO but then lockdown happened, following this for other experiences.

[Lunariagal]

I recognise a lot of your sons symptoms in my diagnosed 11 year old ds.

In your position, I would definitely pursue a diagnosis. You may not feel that at the minute you need interventions, but this can change, particularly with secondary transition starting to feature on your radar. My son has started secondary school this week, and I'm certain that if there was no diagnosis, or he wasn't in the diagnostic pathway, then a lot of the help he have had this week just wouldn't have been forthcoming.

[MassDebate]

Also interested of experiences in how to talk to DS about this. He’s so self critical, and I don’t want him to think that we think there’s something wrong with him if that makes sense?

[Haworthia]

Talking to them about it is hard. I’ve gently mentioned to DD about how autism manifests differently in people, especially in girls and boys. She understands that her brother is autistic and that she doesn’t have many traits in common with him, etc.

I have searched and searched for a book that she might recognise aspects of herself in... but so far have failed. So many reference “Aspergers” or “Aspie” everywhere and, frankly, I think that would just confuse her because it’s an outdated term.

If anyone’s found a book they think is good, let me know.

[Robotindisguise]

Seeing the GP wouldn’t hurt, but get them to be honest about waiting times. Are you in the south of England? I can recommend someone...

[BogRollBOGOF]

I was always very open about DS's dyspraxia prior to diagnosis because it was so bloody obvious. The autism, I was less sure about. School does quite a bit of autism awareness stuff so it was something with a meaning to him.

On the way home from the diagnosis, I talked to him about it and likened it to driving a car. When I drive my car, I'm on autopilot, I'm reading the road, checking my mirrors and my left hand knows what it does with the gears, my left foot the clutch, my right foot the brake and accelerator. A lot of it is sub-concious.
When I get into DH's car, I still know how to drive, but the seat is bigger and presses the back of my legs, my right leg wedges uncomfortably between the seat and accelerator, it's an automatic so I have to remind myself not to do anything with my left foot or touch the gears. I can still drive, but it's uncomfortable, I have to think about the processes more carefully and it's tiring and after 40 minutes my right leg cramos up.

DS is a very intelligent, capable child, but the extra work he has to put into managing sensory input and reading situations to mask and appear NT is similarly draining, so sometimes he melts down when he is overwhelmed.

[FallingOffTheBed]

I'd be interested in a book as well. DS1 was diagnosed aged 4. We went private as the waiting list in our area was crazy. DH was worried about 'labels' and the psychologist said gently; 'If he is struggling people will label him in some way anyway Not having a diagnosis does not make it go away'.

DS is affectionate also. The biggest struggles I have is that he just does not get social cues and really struggles with his peers. The school is a bit hot or miss on that front. We are also waiting for a referral to query tourettes which is an additional set of issues right now.

I would say take it a step at a time. Definitely pursue a diagnosis as at least then you know.

[BogRollBOGOF]

With terminology it is awkward that autism has such a broad range of impact with no official distinctions left. DS1 is intelligent, funny, has some social awareness and generally passes at neurotypical if you don't know he isn't (like eye contact; he focuses on "safe" people, so his teacher is safe and he can look at her, but he wouldn't look at a visitor to the class, and he likes to hide under a curtain of hair). Being autistic it is recognised that his ability to function has significant impairment, not so obvious on a summer's day when half the boys wear shorts, more obvious in 1oC sleet and he is the only child in shorts (Secondary formal uniforms will be interesting...) So when smart, quirky DS1 melts down because the final straw was me asking 3 times if he's changed his reading book and he's kicking, pushing and ranting at me for the 5 minute walk home from school, it's a challenge.

And it's a different challenge to raising a child who shows more visible signs such as obvious stimming, significantly impaired communication and needs constant support/ supervision. Our challenges will be different to raising a child who is affected differently. I can grasp what that world is like, but I haven't felt the relentless intensity of it.

On empathy, DS can link other people's feelings to his. I let him watch Hot Fuzz as he's got a thing about weapons, and I thought it was sufficiently slapstick... he sobbed when Nick Angel smashed his beloved lily over the trolley boys head, "But he loves his plant!" And DS understood that love from his favourite cuddly toy.
Where he struggles is when his emotional response overrides someone elses. He had a petty argument with another child who commented that DS's hair is long and DS called him fat. Both are factually true. Boy managed to appologise to DS with social convention, DS could not appologise for stating a true fact and that using fat is socially different to another observation such as tall. That one was a minefield to explain... DS ended up in more trouble for the lack of appology than the comment (pre-diagnosis)

[Haworthia]

The biggest struggles I have is that he just does not get social cues and really struggles with his peers.

I think this is my daughter’s biggest issue, and her lack of social nous just seems to get more obvious the older she gets. She’s always been one of the boys and I think it’s because she’s never been able to access the much more complicated world of girl friendships.

DH was worried about 'labels' and the psychologist said gently; 'If he is struggling people will label him in some way anyway Not having a diagnosis does not make it go away'

Yep, exactly that. My husband was also resistant to get DD “labelled” (less so for DS as he’s more obviously different) and essentially said that, if she can “pass” as neurotypical, we should leave well alone. I went behind his back to get a paediatrician referral. Six months at home with her has changed his mind, I think

[FallingOffTheBed]

Yep- it is getting more obvious as he gets older too. Sometimes when DS was 4-5 DH would ask if I thought the diagnosis was 'wrong'. No, I never thought the diagnosis was wrong. Someone said once that getting a diagnosis was a 'shock but not a surprise' and that summed it up perfectly for me.

DS's difficulties are becoming more obvious to the point that i am beginning to think mainstream schooling will not be appropriate relatively soon.

[lborgia]

@JanMeyer - I think we need to move pass this as it's not helpful to the OP. I'm allowed to disagree with you when I think you are wrong, without it being because you're autistic. If you remember, you were the one putting us in our place first. You have no idea of my own ND, and you do not get to dismiss comments while making your own mistakes, and then expect them to go unchallenged.

The thing with passing for NT in our house has been that we didn't realise just how exhausting and damaging it becomes. One of my friends said it's like the first time you go to a country whe you've studied the language, you expend so much energy listening, engaging, checking, but it never becomes second nature. You constantly spend half your life making sure you make sense.

I certainly see in my youngest that ther more comfortable he's become with his ND, the more obvious it's become. He no longer worries about eye contact, sitting the right way on a chair etc.etc., and he is so much more relaxed, and happier in his himself most of the time.

I wish we'd known about it/ figured it out earlier though. He is so good as masking ("like a girl" said the pediatrician, which was true, but unhelpful), that there was an awful lot to unpick, and the anxiety of not fitting/ getting it had already become a serious illness.

[MassDebate]

@Robotindisguise I’m in the South East (London commuter belt) so interested in a recommendation if you have one for private diagnosis

[Meanameicallmyself20]

Following as your description is just like my 9 year old too. Also with SpLd (processing/working memory), gifted IQ, mild eyesight issues, anxiety, maybe dyspraxia.
Worried about Pursuing a diagnosis due to the stress it could place on my child as diagnosing the SpLD was a lot to do.
Interesting that someone said private diagnosis - could you say more about why that is better - is it due to speed?

[wejammin]

My 8 year old DS was diagnosed with ASD with PDA profile last year. He also has significant sensory processing needs.
We've found the diagnosis has made a huge difference at school. His school is separate infant/junior and although he was an angel at infant school, his meltdowns after the day were awful. With his diagnosis his teachers can lessen that overload so that he copes generally better throughout the day and isn't totally burned out when he gets home (most of the time).
I found any books on the subject made DS annoyed but he would watch short YouTube videos occasionally and there's some fabulous content made by autistic children and adults explaining their own experiences.

[Robotindisguise]

@MassDebate sending you a PM x