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)

[lborgia]

You can't use positive reinforcement alone, because it's a neuro thing. You might as well ask a fish to walk on land. In the right environment, they swim around beautifully doing their fish thing. On land, not so much.

Despite howls of protest expected, I would say that your son does sound autistic, or even on the spectrum, but def not HFA, because that's not a thing anymore (another conversation another time).

All you need to do is remember that any acting out is through self-preservation. Autism is usually responsible for awesome parts of personality, as well as some of the challenges. As any other specific wiring can give different characteristics.

Again, others will say "you're labelling him", which implies you're making him something he's not. You're not, you're getting a diagnoses, which will help you, him, and in so many ways being relief, knowing that there is a reason, and resources and support.

My son sounds very similar, but I know several people were astonished with the diagnoses. Because they only saw one side when he used all his energy to present as neurotypical.

Now he's able to be himself more, he is still him, but now I see any problems are due to the fish thing. It's how others see him, how he dies in every day classes etc. That causes issues.

Good luck.

[MassDebate]

Thanks so much @Iborgia. Do you mind me asking what benefits there have been for your son as a result of his diagnosis? Is it just better understanding that he isn’t NT? I guess I’m wondering what support we could access if we went down that route, and whether it’s worth it (as I understand getting a diagnosis can be very challenging in itself)

[BlackeyedSusan]

Benefits: legal protection.
Some schools only take it seriously I you are diagnosed. Help with secondary transition.

[lborgia]

In terms of logistics I can't help because I'm not in the UK.

Day to day, it's really helped us, knowing there's a reason for the things that are a struggle. He has ended up needing medicine for his anxiety, but that is all about school, and they've been awful.

However, despite all this, he has blossomed in so many ways, most importantly he says how he is feeling, and that makes everything so much easier.

I cannot speak for anyone else, but I think the fact that he is so on the ball means that he is almost too aware. Eg the impact on friendships, school etc.. so it's really useful to be able to rationalise, explain, work as a team.

1 word of warning. He may find all the information completely overwhelming. I'm happy to PM you some sites etc. That have really helped me, although not today. Let me know.

[LongBlobson]

Hi MassDebate,

I have a 9yo DS who sounds very similar! I spoke to the SENCO at the school when he was in year 3. She had a meeting with me and then referred him for an assessment. We were told the waiting list was about 2 years... It's been 2 years now and heard nothing, no idea how Covid might have affected waiting times.

It's at least been positive to have met with the SENCO as DS had been flying under their radar. Since I flagged it with them his teachers are a lot more aware of his issues and have been better at communication with me and open to my suggestions of ways to help him.

[Sausagefingers]

Hi, I hope you don't mind me following this thread with interest. My DS is the same age and has all the same traits as your DS except he also has sleep issues too. I have often wondered if or how I should get him assessed and whether there is a benefit to doing so.

[BogRollBOGOF]

He sounds similar to my DS. I went to the GP at 7 because we'd had an awful summer including meltdowns lasting 3-4 hours. Was diagnosed 15m later and I was relieved and stunned that the consultant diagnosed him so readily as he is very good at masking.

Things eased a little from accepting that he was likely to be on the spectrum and being open to difficult behaviours being signs of a child genuinely struggling rather than being awkward. We are both happier for the diagnosis as it helps him to understand his strengths and challenges. School need a kick up the bum as because he masks, they don't see the issue. They are helpful with his dyslexia (plus he has dyspraxia and the whole package can be quite distressing as the perfectionism and meticulousness of the autism conflicts with the challenges of the dyspraxia and dyslexia)

Long term, it's his choice if he discloses it. I see diagnosis as a benefit in securing support and understanding for his differences.

[MassDebate]

Thanks to everyone for the very helpful input and Sausagefingers I’m glad the thread is helpful to you too!
BogrollBOGOF your post resonates as it was on our summer holiday last year that we first felt something wasn’t right. We went to a fabulous resort and did loads of things for the kids but DS’ difficult behaviour really impacted on the holiday. With hindsight I think he struggled with the lack of familiarity.

[LaLaLandIsNoFun]

You just described my son who was diagnosed autistic

[JanMeyer]

Despite howls of protest expected, I would say that your son does sound autistic, or even on the spectrum, but def not HFA, because that's not a thing anymore (another conversation another time).

What do you mean "autistic, or even on the spectrum?" That is literally the exact same thing. If a person is autistic then they're on the spectrum. And you can't be "on the spectrum" without being autistic.
And HFA was never really a thing. It was a diagnostic subcategory of people diagnosed with autism but who had an IQ above 70 and no significant speech delay. No- one was ever actually diagnosed with HFA because it never actually existed as a diagnosis.

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).

Being affectionate doesn't mean a person isn't autistic. It's a very outdated and offensive stereotype that autistic people can't/don't like such things. Equally doing fine at school or being popular doesn't rule out autism either. You say he's happy to speak with adults, does he prefer talking to adults and older children rather than his peers? Because that's quite common with autistic children.

[redpandaalert]

DS has a very similar profile he has lots of friends and is sociable and empathetic (maybe overly so) but he was at the top of the ADOS scale for HFA. I do use the term Aspergers for him and I think that most accurately describes his type of ASD. My DS diagnosed at 10 found having the label helped him understand why he struggled with things other boys found easy/natural.

[MassDebate]

Apologies JanMeyer if you found my description offensive. There are lots of articles on the net which suggest a lack of affection is one of the key symptoms of autism, although most of them focus on the more severe end of the spectrum. It’s not easy to find answers when you child has some traits but not others.

@redpandaalert how did you go about diagnosis/what prompted you to do so?

[Letteblue]

Is there any benefit to a diagnosis if DS is on the spectrum
If ds has autism he will have the problems that can come with it regardless of diagnosis or not, but diagnosis can lead to help in education etc, in workplaces when older. Help understanding himself.

[JanMeyer]

Apologies JanMeyer if you found my description offensive. There are lots of articles on the net which suggest a lack of affection is one of the key symptoms of autism, although most of them focus on the more severe end of the spectrum. It’s not easy to find answers when you child has some traits but not others.

No worries, i just wanted you to be aware that's a stereotype. I see it a lot online, parents saying "well my kid has a lot of autistic traits but he's affectionate, intelligent and gets jokes." Because all most people know about autism is the stereotypes. That we don't do affection, lack empathy, can't tell jokes, don't have any interest in other people...." You get the picture. So often a person thinks if their child is affectionate or sociable, then they can't be autistic.
When it comes to autism it's wise to remember the saying when you've met one person with autism then you've met one person with autism.
Point being whilst autistic people will all have difficulties in social interaction, communication and flexibility of thinking - no two autistic people will have exactly the same traits or symptoms. And the presence or absence of one particular characteristic doesn't rule in or rule out autism.
You might find Tony Attwood's book on Aspergers helpful, whether you decide to pursue a diagnosis or not. Though from what you've written i think you've got reason enough to think about doing so.
Autistic kids can really struggle with the transition to secondary school, that's actually a common age for an Aspergers diagnosis because that's when they start to struggle or their difficulties become more obvious. But if you have a diagnosis before then, the transition can be managed better and hopefully the school will be supportive if needed. That's the main reason i would bear in mind when thinking about a diagnosis. Because your son might be doing fine now, but what about later, what about when he's a teenager?

Oh, and it's fine to say "on the spectrum." That's still a phrase that people use in regards to autism. Though it's not very helpful to think of it as a straight line, with a "mild" and " severe" end. This is a great article that explains what the spectrum actually means: neuroclastic.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/

[Robotindisguise]

A diagnosis is really helpful in terms of meeting your DS where he’s at, and tuning out unhelpful advice which is useful for NT children but not for you. Can you afford £800 to get a private report from a clinical psychologist? Because that’s the fastest, simplest option.

[Fatted]

Your DC sounds very, very, very similar to my eldest DS. We are currently at the early stages of the assessment process, but covid has thrown a spanner in the works.

I think it is useful to pursue a diagnosis. At home, my DS behaviour wasn't/isn't so much of an issue. At home, I think we understand him better and can predict and manage his behaviour better. There is a history of similar behaviour in my family although never diagnosed, which I think kind of helps. We 'get' him.

At school is a completely different kettle of fish. He has meltdowns constantly about school work. He is very self critical and if he can't do something straight away, he won't even try. He has been known to spend the entire time he's been meant to do something complaining about doing it instead. And by complaining, I mean pacing, crying, shouting or just straight up avoiding. So, yes he needs the diagnosis to help with school.

[Robotindisguise]

@JanMeyer - I do think it’s important to be gentle to people joining our community. There is a lot to learn - and shedding those stereotypes ourselves (even if we didn’t realise we even had those prejudices until they affect our family) is challenging, I think.

@MassDebate - if you want to chat, send me a PM.

[Robotindisguise]

@fatted my DD rarely melts down at school. She holds the masking together until 15 minutes after walking through the door at home...

[Starlightstarbright1]

Sounds similar to my Ds who has recieved an Asd diagnosis a few weeks ago.

It has made no difference at home and he hasn't returned to school to see if it helps him . He has Adhd too.
Biggest problem is that he is medicated for school and masks so they don't really see his struggles

[redpandaalert]

Private diagnosis if you can afford it. I think it's much each to diagnosis them before they enter their teen years and then they will have to actively engage in the process!

[lborgia]

@redpandaalert - you misunderstood what I was saying.

What I was saying was "whether you say autistic or in the spectrum"... but it was late at night here, I didn't want to focus on all the stuff you so brilliantly explained, but just answer the question asked.

I know more about the lived experience of autism than I ever imagined I would, but try not to bombard newcomers with all the rules and details straight off. However much I want to.

[lborgia]

Apologies RedPands, that was to @JanMeyer

[lborgia]

Ps, if you're going to be so categorical about explanations, it's worth noting that Aspergers is no longer an official category, and that Tony Attwood can be very useful, but the most useful sources are based on autistic adults and their opinions.

[Haworthia]

I recognise a lot of those traits in my nearly 9yo, OP.

She has been on the waiting list for an assessment since April, but since assessments haven’t actually been happening due to Covid, I’m really concerned that she won’t be seen for years. But that’s by the by

I was “lucky” in that I have a younger child diagnosed with autism already, so I was able to bypass school and get our local autism HV to make the referral for me (we had a long chat and she listened to all my concerns and agreed I was right to raise them, which was such a relief).

School would not have supported me at all. She masks hugely, is bright and very well behaved (a big rule follower). Loves the company of adults (has been described as being “like a mini adult”) but struggles to relate to her peers (although I don’t think school have noticed this particularly).

Now school is open again I don’t even know whether to tell them she’s awaiting assessment. Haven’t spoken to last year’s teacher about it during lockdown, I could tell that she was shocked and maybe a little disbelieving, although she accepted that kids do mask and the child I know could be very different to the child she saw every day.

[JanMeyer]

No it's not, but the book has Aspergers in the title, so kind of had to use the word there. And whilst Aspergers is no longer a diagnosis in the DSM it's still used by professionals, for example in the past year I've heard people say "my son was diagnosed with ASD, what would have been Aspergers before."
It isn't still in the ICD at the moment?
Besides whilst it's not a diagnosed anymore, those of us who were diagnosed with it still exist. And the book still has Aspergers in the title.

And yes, it's good to read stuff by actually autistic adults. But Tony Attwood's book can be a good place to start for someone who's new to all this. Funny you say the most useful sources are based on autistic adults though, as an autistic adult I found Attwood's book very interesting and helpful, hence why i recommended it.

Oh, and FYI whilst Aspergers is no longer an official diagnosis, HFA never was. I don't get why you think that's such a bad thing to point out? Guess you think the thoughts and opinions of autistic adults are only useful (or count) when they say things you like or agree with.